History

Tuesday, May 30, 2006 7:37 PM CDT

Some pictures from Emma's big trip to Atlanta. She did so well, especially dealing with travelling & a hotel. I'm really proud of her!! Normally, all those different settings & changes upset her a lot more than they did. Guess we know where we're staying each time we visit Atlanta!!!

Well, we are officially over the 'rush of excitement' of getting to Atlanta & meeting Dr. Shoffner, of having the biopsy & tests done...of being so very close to having an answer. Now, we've moved on to the reality of things--of the waiting & of a pending diagnosis. It will be so good to know, but at the same time it's just a really strange experience. You hope for an answer, yet at the same time that seems so odd...I think we've reached the point where we know something is defenitely going on with Emma & that it's not going away tomorrow. Once you move on from that, it becomes your highest priority to find out what is going on with your child. Still, it is weird to be so anxious to find out your child has a chronic and/or life-altering disease. Sorry...I'm going on & on!! We are praying that the dx is one of the two neuro-metabolic disorders Dr. S mentioned--those have defenite treatments. They would help at least some of Emma's issues. Anyway...we are only a week (okay, 6 days!) since the biopsy...that means 7-11 more to go. Immense amounts of patience needed here!!

Emma still has her cold. The breathing treatments are helping & she is so great at taking them now. Last year, she would just scream the whole time, slowly but surely she's gotten to feel ok with it. Now, she'll even open her mouth & lay there calmly for it. What a big girl! She has major snot issues...really bad with this cold! It's been impossible to keep her face free of it. Finally, the past 2 days, she is letting us wipe her nose without throwing a fit...guess she prefers Kleenex to boogies!!

No OT/PT today because of the cold & fever. I really hope that if for nothing else, we can find a way to keep Emma from getting sick so often. Anyway, she'll see Dr. K on Thursday or Friday to follow-up on the biopsy & to schedule the sleep study. I think I posted it (but things are a blur!), but we got GOOD news--Emma's MRI was normal (THANK GOODNESS!). So, the GI wants to do an endoscopy to rule our a fungal infection. I need to call to schedule that.

I've been kind of in the dulldrums here...things are just settling in for Josh & I. And, then, of course it's the day to day stuff that you need to keep up with. I need to ask for some more prayers--they defenitely worked last time--for my mom (Emma's Nanny). Last week, she found out a lot of bad news. First off, she will need another catherization because of the results of her stress echo today & from new chest pain she has been having. That will be done late this week or early next, as soon as my Dad gets to Florida. Last week, they also found out that Mom's carotid arteries are more blocked than expected...one is 50-75% blocked, another is moderately, the others are minimally blocked. My mom has mini-strokes (TIA's) that have come & gone for a few years now--always thought to be from her carotid artery blockages. However, after seeing the neurologist last week, he feels the TIA's are not from the carotids, but from something going on in her brain. Mom had an MRI & MRA today, to see what is going on there. She had a miserable week, from the impending catherization for her heart to the possibility of a stent or angio for her carotids...and the neuro even mentioned brain surgery--on top of everything else. Please pray for some good news to come from the MRI & MRA, and please pray the cath goes well & that things look fine once they get a look inside. THANK YOU!

Friday, May 26, 2006 5:36 PM CDT

We are home safe!! Emma slept the entire flight! She was wiped out & still not feeling good. Poor thing could not open her eyes this morning & her nose was all clogged up.

As soon as we got home, I left with her to see the doctor. She does have an upper resp infection. So, we are back on treatments again for a while & decongestants. Her O2 started down at 90 again, but the nurse waited a while & it did go up to 96. I think she just likes to give Mommy gray hair!!

She is very happy to be home, she has been playing with her toys & of course, Madison! There have already been some altercations, so things are back to normal here! YEY!

It was a whirlwind trip, feels like we were gone longer than we were. Josh & I are looking forward to a nice, relaxing weekend!!! Slowly things are sinking in & we are able to digest all the info we received this week. I don't think we were startled by anything that we learned, but perhaps we're coming to realizations about things that we hadn't before. That is helpful, however challenging it may be...but it is necessary to move forward. At the same time, we are very hopeful that in the coming years, Emma will continue to blossom in her own way (the best way!!) and that her immune system will get stronger & even that there will be a treatment for her. Bare with me, we've had very little sleep for a few days. Hope I make some sense!!! So far, we are feeling more relief at having met Dr. S. & all we learned from our visit. I'm sure as the days & weeks pass, we'll be more anxious for results.

I have some cute pix of our Little Tough to post & will probably write a new one that goes over the whole trip (again, once I no longer sleep-deprived!!). I'm sure I forgot some key things!!!

Thanks for coming by! Thanks to everyone who helped us with the trip, from watching Madison to helping us find a hotel!! The trip was so much less stressful because of YOU all!! THANKS!!!

Thursday, May 25, 2006 5:33 PM CDT

Emma had her biopsy today & did well. We are all worn out. I was expecting an easier recovery, it wasn't completely terrible--but I was expecting the post-op to be like after her tubes & instead it was more like her fundo. She did GREAT for the procedure (skin/muscle biopsy, spinal tap, blood & urine samples). In recovery her O2 sats dropped to 90 & then were back & forth between 90 & 92 for a few minutes. We repositioned her & that did not help, so they were going to give oxygen. Thankfully, as we moved her to get closer to the O2, she got very upset & started breathing deeply...sats went up to 95.

After that, things were much smoother (& less nerve-wracking!!). She was mostly having sensory issues making her upset (O2 monitor on her toe, IV on her wrist, biopsy mark, etc.) & that was hard. She'd sign "boo-boo" & point to her leg, they said it might feel like a charlie horse. She did enjoy her wagon end toward the end, they have a nice koi pond. She did have a little fever at one point, but by discharge time it was down to 98.9. She is still congested & has a little cough, but she's doing alright. Her fever has stayed below 99.9 so far this afternoon.

We are all very tired! And, VERY glad all this testing is over. We're relieved this step is done. Thank you for all your prayers. Will update again once we are home tomorrow! (((HUGS)))

Wednesday, May 24, 2006 7:06 PM CDT

Well, we are here in Atlanta. We arrived yesterday early afternoon. Emma did great on the flight, despite her screaming when we first boarded the plane! She was petrified at first, but thankfully was fine after a few minutes...thank goodness they let us board before everyone else!!!

This a.m. we had the pre-op appt, that was easy. Then we met with Dr. Shoffner...and it's true--he is great! Everyone said he was wonderful & our expectations were exceeded! He was very easy to talk to, has a very kind personality, & was so informative. We learned a lot today. He gave us the best case & worst case. At this point, he cannot say what Emma's developmental track will be. He said kids who present like her at this age go into two groups by age 6--those that development curve goes higher & may have minimal learning disabilities, & those who continue on a more static track & continue having major delays. He did say he thinks her immune system will get stronger by age 5 or 6 & hopefully she won't be sick so often (YEY!!). He is pleased with her improvements in motor skills, but said her cognitive/speech & behavioral areas of development are still a big concern. He reviewed everything with us. Emma napped the whole time as he talked to us...what a blessing!!! We were able to absorb it all & take notes! At this point, he feels Emma probably has either a type of folate deficiency (or some other deficiency...sorry working on little sleep, notebook is in car!!) or mito. Tomorrow, Emma will have a muscle with skin biopsy, blood drawn, a spinal tap, & he'll also do a special chromosome test (name escapes me again!). This will look at ALL of her chromosomes & could pinpoint even a slight defect. Basically, he is doing every possible test that one could have done. From all we heard from Dr. S, he WILL find the answer. He seemed fairly certain of that. Results will take 8-12 weeks & he assured us he will be spending many hours on Emma's case. How awesome is that to hear a doc to say?? He really is an incredible man & you quickly get the sense that this is his passion.

After we receive the results (a long report) in the mail, we will fly back to Atlanta to go over everything. From then on, we will come back for follow-up every 12-18 months. He did tell us some exciting news, they are VERY close to some new trial treatments for mito. In about 24 months, he will have trials available which so far look very promising.

Josh & I feel like we have turned a corner & things feel very promising right now. I think we both have a big sense of hope & of knowing that we will KNOW very soon.

Please say some prayers for Emma as she goes through the procedure yesterday. She is running fever this afternoon, with a runny nose. She is able to have tylenol & sudafed, & that seems to be helping. Please pray for the fever to go away!!! And, also that she will do GREAT tomorrow & be out of there in no time!!

We had a wonderful visit with Leslie, Morgan's mom. She was so sweet to come by the hotel & visit with us. We're hoping maybe tomorrow the girls can meet. Thank you Leslie for coming by!!! We're wearing our new Miracle For Morgan bracelets!!! Please stop by & wish Morgan's big bro, Carter & Leslie too a happy birthday.

Okay, Em has been snuggling on my lap this whole time. We are watching American Idol, Josh ran to get some dinner. He agreed to let me watch all of Idol, DESPITE the fact the Mavericks' game begins in 10 mins! LOL!

Thank you everyone for your prayers & well-wishes for Emma on this trip. They have given us so much strength!!!

Monday, May 22, 2006 5:19 PM CDT

Thank you everyone for a wonderful day yesterday. Emma enjoyed herself so much, it was just the best for Josh & I to see her having so much fun!!! We hope everyone enjoyed the day as much as we did.

I will post pictures when we get back from Atlanta. I've got some really, really cute ones!!! Thank you all who came & helped us celebrate our incredible Emma!! Thank you also to everyone who made donations for Emma's birthday. Medical City will be thrilled to receive 2 new wagons, DVD's, & batteries and Eli's Angels appreciates everyone's thoughtfullness!! Also, Emma was very spoiled by all of you with new toys (loving the Elmo radio! And, can't wait to use her new sandbox toys!), clothes (she is wearing her pretty pink dress & new cardigan tomorrow! She is all set for summer now!!), & a wonderful new Blue's Clues quilt made by Honey!! A special thank-you also to Trisha & Shayne (Lauryn too!) for our Travel Care Package! That was so sweet & it will come in handy big time!! THANK YOU ALL!!!!!!

We leave the house around 7:30 in the a.m. & our flight is at 9:00. We are a mix of relieved & nervous...but thankful we are finally at the date for Atlanta. Thank you again to Leslie, Sonya, & Vicki for all your help with this!

I will update more on the party later...lots of cute stories. And, post pix!!

We will probably be able to update from Atlanta, so stay posted!! Wish us luck on the flight (sleep, Emma, sleep!!), the visit, & biopsy. I hate that our baby girl is going through another test...but I am so hopeful that THIS is the one that holds all the answers.

Thank you everyone for your prayers, love, & support. It was so apparent how much everyone cares for Emma & how she has become an important part of so many lives. We could feel it in the air yesterday. Words can't express how grateful we are.

Quick cute new thing Emma now does: She signs "I Love You" (the ASL way! Although sometimes it is "Hook 'Em Horns," which is fine because we are UT fans!! LOL!), then puckers up her lips for a kiss, & then stretches out her arms & says "ug" for a big hug. It is SO neat!! I love how affectionate Emma has become lately. What a blessing!!!

Lots of UGS from Emma!!!!

Friday, May 19, 2006 3:19 PM CDT

Okay, some very good news to report down below...but first a sweet story.

After Emma's video swallow, we were waiting for the ST to write up the full report. An adorable little girl came in, just a bit taller than Emma. Her name was Emmy & she too has JUST turned 2. Emmy has Down's Syndrome. Her & Emma were too cute together, they were like mirror images. Emmy said "Hi" to Emma & then was babbling away to Emma (as Em stood & just stared at amazement at her new pal!). Her Mom asked "are you talking to her?" & then said "unfortunately she doesn't have too many words." I think trying to explain to me why her 2 year old didn't have a big vocab. I smiled & said, "well, that's good because Emma doesn't have too many words either! They are a good pair!" And, they were. They'd just look at one another & Emma would try to copy what Emmy did. It was very cute! I really hope I can find a playgroup or something for Emma to join, with kids that are more her speed. When we are out somewhere & I see other 2 year olds, they move way too fast for Emma. It would be great for her to be with kids who really were her peers...she was a lot more social with Emmy than I'd seen her be with other kids. She waved to her, which for Emma is a big deal! And, she stayed near her--a lot of times in a new setting, Emma will stayed glued to us try to find a 'safe' spot by herself. That was really neat to see!

Okay, results...

GREAT NEWS! Emma had her video swallow today & did VERY well. She was the most upset this time around than her other 2. Which, in a way, was good because those are usually the conditions that make aspirating worse. They did not test her with thin (normal) liquids. Since behaviorally she is doing better with nectar thick, the ST decided at this time we should just not test her with regular consistency. She DID NOT aspirate or penetrate with honey, nectar, or pudding consistencies!!! That is AWESOME! ALSO--her oral motor & swallow function have all improved!! No more delayed swallow & things look good! Liquids still come out of her mouth, but that is not a big deal--something that will improve as she gets older & we continue with her oral motor exercises. YEY!! The ST said she obviously has some oral aversion, & with her low-tone & devel delay, we still need to be conservative with her food choices (i.e. not really hard or dry foods, always observe while she eats, etc.) & keep all liquids thickened. She may still have some oral motor dysfunction & some of her issues may be learned behavior (her experience with eating/feeding has been a difficult one, choking, etc. so she is super cautious). So, we just need to continue with therapy & give her time, the ST thinks she'll keep making improvements in this area!! What a relief!!!!

No MRI results, but I have to say, the video swallow results were so encouraging. I'd imagine if she did have that malformation, it would be evident watching her swallow function. Oh, we won't get results until Monday--the GI docs is out until then. I was biting my nails yesterday, but after today's good news, I'm very relieved!

More good news: So far, the panels are back on Madison are normal. We're still awaiting the ANA & thyroid functions, but her CBC, liver, & other levels are normal. YEY! She's still running those fevers...WHO KNOWS!!!

What a NICE way to start the weekend, after being so bombarded early in the week!!! Now we are onto focusing on our visit from Grandpa & Emma's big party. Very glad we have all these fun distractions to keep us busy until Atlanta!

Thank you everyone for coming by & giving us support & your prayers. WHAT A WEEK!!! TGIF FOR SURE!!!

Hope everyone has a GREAT weekend.

Thursday, May 18, 2006 12:46 AM CDT

Of course I couldn't let the day go by without an update on the MRI. Emma did SUPER, of course! The hospital has a new pediatric imaging center it uses, we've been there before for a video swallow. Anyway, they are just great there--it's a very calm & child-friendly place (helps a lot!). PLUS, the anesthesiologist is one we've had before. He called last night & thought he had seen Emma another time. Sure enough, when we saw him today, he was the one for her 2nd PICC line & I think her inpatient CT scan. It was reassuring to see a familiar face. After her PICC line placement (August), he carried her out of the room to us. It was very sweet. He did the same today. It really helped my nerves knowing such a caring doc was looking out for Em.

She did very well, had her usual choking fits as she came out of the anesthesia. But, she is fine now--you'd never know she had such a busy morning! The center said the results will be at the GI's office by 1 pm. Not sure if WE will get the results today--but I'm going to try.

They are ruling out an Arnold Chiari malformation, which could cause Emma's dysphagia & feeding/drinking problems. Tomorrow, we go back for a video swallow. It will be good to see what's going on, if her swallow function has improved & if she is really aspirating. Thanks everyone for checking in.

What a week. If anything, it's made our anxious wait for Altanta seem not so bad. We're too busy to think straight! Dr. S's office called today to confirm...it's getting so close. Take care!

Tuesday, May 16, 2006 10:07 PM CDT

I have pictures to post, I promise I will get to them ASAP!! Emma has been enjoying her new wheels (yes, she did get that pink & blue car she test-drove!) & other goodies. Thank you to everyone who has already donated in honor of Emma's birthday, we are so very appreciative! A BIG thanks also to Emma's pal, Kari, what a wonderful surprise! Emma adores the Bambi bag & ABC book--that was so sweet!

Lots of updates. On the drive home from Dallas today, I thought to myself, "Wow, what a week..." & then realized it was only Tuesday!! So, stick with me, it's long...

MONDAY
We started the day with bringing Madi back to the Infectious Disease doc. She has been followed by him for over a year now due to odd fevers w/ no symptoms, aches, & weakness. She did have PFAPA syndrome, which the ID doc diagnosed & her last bout with that was a year ago January (high single dose of prednisilone treated it). Since then, she continues to have low-grade fevers on & off, mostly in the evening. It has become a normal thing for her, although sometimes they come with severe mood swings or hyperactivity. She also continues to complain about feeling week in her legs or arms, & various joint pains. She has also had a rash that comes & goes on her knuckles. The ID doc ran a lot of labs (in the past, Madi's labs have been positive for inflammation). He still feels she has something in the autoimmune range, this time he wants to rule our Dermatomyositis (I cannot even pronounce it). He feels there is a high likelihood that if we can't pinpoint a specific autoimmune disease, that this could all be a manifestation of mito. That was a lot to take in. Madi was so brave for her labs...did not cry & stayed so very calm. She did great!! We should get the labs back late this week (in fact, he hopes we'll have them to bring to Atlanta with us & run them past Dr. S). We return in 2 weeks.

After that, it was Emma's follow-up with the Urologist. YEY! Good news! Since Emma's VCUG's never give accurate results (negative for reflux, PIC Cysto shows reflux), she won't need another. We will simply play it by ear. She'll need a sonogram in 6 months, then after that they will be yearly. As long as she does not have another UTI & her yearly sonos look good, we are in the clear as far as any more procedures. WOOHOO!

TUESDAY
Emma did not make it to therapy, I was not feeling too good this morning (stress! migraines & all!). We got to Emma's ped for her 2 year well-visit. They are amazing!! The nurse measured Emma & then led us to the room, when she opened the door, the other nurse & the receptionist were waiting, bubbles were everywhere!!!!! Dr. K came over & they all cheered "Happy Birthday Emma!" They got Emma this adorable little cake with her name on it, a Dora balloon, stuffed kitty, & sweet card. I was so moved, I still can't believe our pediatrician's office did such a thing!!! It was just awesome!!! They are always so sweet & caring about Emma, and we appreciate that so much...we never expected anything like this!! Emma did really well with her exam (popping bubbles sure helped!!). Here are her stats:

DRUMROLL!!!
Weight: 25lbs 6oz THAT IS 27WOAH!!!!!)
Height: 31 inches Almost 3(not quite on the chart, but that's okay!)
Her head is in the 77R>
It was sad to again say "no" to almost all of the "Is she doing..." questions. It's funny, I used to get so concerned when answering those questions, now I find myself defending Emma in a way..."no, she doesn't have a 50 word vocab, but she is doing so great, has tons of signs & is really trying to talk..." I have found that as time goes by, these milestones mean very little to me. I look at Emma, happy, sweet, funny Emma...my gosh, she's so great! I know she feels loved & she is enjoying this life, that's what counts in my book. I know they need to track all that stuff, but it just stinks as a mom having to go down the list.

Emma has some 'mini' staph bumps on her tummy & legs. We are to treat them topically with the antibiotic cream & hopefully they will go away FAST. Please pray they do. When we get back from Atlanta, Emma will have a sleep study scheduled to rule out apnea. Emma did have to get 1 shot today (even though no one wanted to give it to her!). She got a Dora sticker when all was done, & she was waving bye-bye to everyone.

Then, it was in the car & down the highway to Dallas. Both girls had appts with the GI doc. He is going to put Madi on Reglan, to get her bowels moving. The Miralax has only improved things slightly, sames goes for Prevacid. He thinks her system is just not moving enough & the Reglan will stimulate it enough to help her tummy. It would be GREAT if we can at least resolve her tummy troubles. Her growth is great, which we knew--she has been growing like crazy this past year!

Emma's appt didn't go quite so smoothly. He is VERY happy about her weight gain & said her height should start to catch up, but he feels at this point she will be quite smaller than Madi (her low f height is not nutritionally based). We're continuing on Neocate & tube-feeds. We talked about her eating issues & her seeming to aspirate again. He ordered an MRI to rule out Arnold Chiari malformation, which causes some swelling at the base of the brain & could be interfering with her swallowing. That will be on Thursday. On Friday, she will have a video swallow again, to see if she is aspirating or not. If those are both normal, he will do an endoscopy to make sure she doesn't have any irritation or infection in her esophagus. He thinks a big part of her not eating/drinking could be neurological, but also wants to rule out anything that could be treated. That was unexpected, to have these tests. But, it will be good to get a true picture of how things are going with her swallowing & also the brain MRI.

Please keep Emma & Madi in your prayers with these tests. I think I may wake up tomorrow & my entire head of hair will be gray!! I haven't really digested much of this yet, I think Josh & I will be on autopilot until Atlanta. We just need to get through next week & then we can see if we need to worry about any of this. We'll keep everyone posted. Pictures will be up ASAP!!

Thank you for coming by & if you have read this far down, you are truly amazing!!! (((HUGS)))

Friday, May 12, 2006 10:10 AM CDT

Happy Birthday, Emma!!!!!

To our sweet Emma,

You have given us so many gifts over these past 2 years, taught us so much, & just fill our days with so much love. We are so proud of you, for all your determination. You lift us up with your smiles.

Over the past 2 years, there have been times when we were scared, when our hearts ached for you, & when we just cried and didn't know what to do. But those are not the times we remember most...we remember the mini-celebrations we have each day, we remember each smile you've given us after an icky test or procedure, we remember your hugs, we remember how far you have come & how you keep pushing further along, not letting anything stand in your way!!

In the past, for every holiday, birthday, etc. that I've been asked what I wanted...my mind always shouted "to make Emma all better!" I've prayed for that each & every day--for a while. Our sweet girl, we know you may always have to face challenges & we know you will fight through each one, Little Tough! Your Daddy & I now pray for your happiness and for you not to be in pain. That's all we ask for. We now know that your differences are gifts, they are blessings. It is because of you that we are better people, we have come to know so many wonderful families, & we have even been able to teach others about what we've learned so far on this journey. Emma, Mommy & Daddy want you to know that we think you are so special, & we know that God blessed us with you. He sent you to us for many reasons--some we have already figured out & others we will learn on the way. We are so thankful to Him for allowing us to be your parents. WE LOVE YOU!!!!

Your sissy has already serenaded you several times & has given you many hugs this morning. I don't think there is much more we could add here, that she hasn't already told you herself! Could a big sister ever be so kind, caring, & concerned as your Madi? I don't think so...she loves you so very much! It has been so wonderful to see you playing with your big sis, she has waited for that so patiently. Daddy & I are so thankful for both of our beautiful girls!!

We love you! Have a wonderful day & enjoy your Blue's Clue's party next weekend!!!

Love & Hugs,
Your Mommy, Daddy, & Big Sis, Madi

Over the past 24 months, we've heard from so many, "How are you holding up so well?" First, we have to say, there have been some very tough times, but trust us, the great times have far outshined the challenges! We still have our Emma here with us, to hold, to snuggle, & to make new memories with, and we are so grateful. We know some dear families whose children have been called to heaven this past year. Whatever we face day in & day out, we always remember how blessed we are to have our Emma. The other, more simpler, part of the answer to how we are holding up so well is EMMA! Watch this montage & you'll see why we embrace each day, good or bad... Please click on the "Stop" on the video from above, & then watch this...

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Thank you for coming by. We appreciate your prayers & support. Thank you everyone who has joined in our Wagon Fund. I've spoken to Kim with the Child Life Team, & we are now going to deliver the items the week of May 28th. We had originally planned doing it the day after Emma's birthday party, but we are leaving for Altanta that week. Besides the fact it will be a hectic week, we also are being very careful about exposing Emma to any germs before the trip. So, Kim is going to call me back later today with a firm date. We are so excited!! We'll take lots of pictures & share with y'all. THANK YOU!!

On May 12, 2004, TWO very special girls were born--our Emma & her pal, Morgan. Please stop by & send Morgan some special birthday greetings! Also, Morgan's parents announced a new website, please visit www.MiracleForMorgan.org

Friday, May 12, 2006 8:48 AM CDT

Happy Birthday, Emma!!!!!

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Wednesday, May 10, 2006 10:42 PM CDT

Be forwarned...this is a looong entry. Great stories after this medical update...

We have seen some decrease in seizures with the increase in meds, the docs said it might be a few more days before we see the total effect of the new dose. We are so relieved that things are getting better! The neuro said the headaches could be migraines. Emma has such a high pain tolerance, that I knew the pain was very bad for her to be reacting to it, but I really pray they are not migraines. We are to keep a journal of them for the next month or so, to see if there is a pattern. Then we'll decide what we need to do, if anything. We're hoping that with less seizures & better sleep, the headaches will go away or at least get a lot better. If they get worse, or anything changes we'll see the neuro sooner. As far as her sleep & possible apnea, she'll need a sleep study or home monitor. Our ped will handle that. If Emma does have sleep apnea & migraines, they are all intertwined with her seizures...each one affecting the other. I'm praying that the headaches get better, it is so sad to see her in such pain & they come on so suddenly. Thank you everyone for your prayers!

Well, Emma has once again shown us how amazing she really is! It seems everytime there is a concern, or Mommy starts worrying a lot about her, Emma shows us something new or just does something awesome. Emma has been working so hard on her words (loves her flashcards & picture books!). She has started to say "ball" & "cookie" a lot (priorities!! LOL!). Some days she is still non-verbal, but we hear her own version of "Madi," & she signs and says Mommy & Daddy (LOVE IT!) more than ever before. I find that in a public setting, she just can't go through the processes of speech. She is trying so hard!

Yesterday was a BIG day for Em. I was giving Madi a bath & like usual, Emma was coming up to the tub, wanting to splash in the water. Each time I offered to put her in the tub, she'd get upset (like always!). After a few minutes of this, when I asked, she nodded yes & signed "bath." Wow! I put her in the tub next to her sister & the two of them were so happy! Madi has talked for soooo long about taking a bath with her sister, it was very sweet to see!

I had handed Emma some foam bath toys that are in shapes. I asked her to show me the triangle...AND, she picked it up! I then asked her where the circle was...she picked up the circle! I asked about the rectangle...& yes, you guessed it! I honestly thought it was a fluke, so I asked her this again, & again she showed me all the right shapes. Woah!

I called Josh in & first said "Look! Our girls are in the tub together!!" Then I asked Emma the same questions & again, she showed us the shapes!!! I am still in awe over it. This is one of those things that just blows me away. I'll never understand, I guess, how the brain really works. I know there are parts of Emma's brain that do not work as they should & that will always be the case. But, there are other parts that are working fine and so we see glimpses of those areas, speckled in with everything else. It's so odd to me, though...that she knows her shapes (something that we talk about when working on puzzles, in OT, & in some books...but it's not like we are focused on teaching her shapes at this point!). I always knew the brain was so complex, I just never witnessed it firsthand.

The last momentous feat for Emma yesterday was her staying at Honey & Pops while Josh, Madi, & I went to Kindergarten orientation. We were so proud of her, she had a great time! Thank you Honey & Pops!! It is such a nice thing to see Emma giving hugs and really enjoying herself with her grandparents!!

Yes, Madi had orientation...oh boy! I'm really excited for her, it's only 1/2 day, so I think it will be an easier adjustment for all of us (okay for me!! LOL!). She introduced herself to the prinicpals (first, middle, & last name--of course! Future President, as Pops always says!) and had a great time checking out her school.

Well, that was long, but I had to share all of those tremendous things our Emma has been up to. She reminds us all the time that anything is possible!!!!

If you missed the last journal, please check it out, there is a cute video montage of the girls! Thanks for checking in!

Monday, May 8, 2006 9:42 PM CDT

Well, some good news... Emma's trough levels were LOW. So, we are upping her dose (by 50%), this should help. Hopefully we'll see some changes in 2-3 days. And, at least now we know 100% those episodes are seizures & know what we need to look out for going forward. They are not sure what the cries/screams & apparent head (& arm) pain is from. The neurologist should get back with us tomorrow, hopefully he'll have some insight into it. The ped doesn't think it's the medicine being off-dose, but who knows. Thanks everyone for your extra prayers as we figure this all out.

A few more days & our baby officially becomes a toddler. I have to say, I defenitely don't mind the fact that Emma needs to be held a lot or that she is still small enough to cradle. Madi at this age was pretty independent--I only got to rock her if she was sick! It's funny, Josh & I can never seem to put Emma down once she falls asleep. Whichever one of us puts her to sleep, we both just seem to linger with her in the recliner.

Emma did not have speech today, but she should have OT tomorrow. She'll see the allergist (rescheduled) on Weds for follow-up (Madi too!). And then, of course, Friday is Em's birthday!!

Here's a little thing I made (saw what Austin's mommy made & had to give it a go!), make sure you click STOP up above on the Curious George song. I have both laughed (when Emma is a bully to Big Sis) & cried (Madi's song, oh & every other part!!), so be warned!! ENJOY!

Create your own video at One True Media

Sunday, May 7, 2006 6:09 PM CDT

I had mentioned a while back about my sister's friend & her husband (who was in need of a kidney transplant). Well, on Tuesday, Stephen will go in for his kidney transplant. Please keep Stephen, his wife Nancy, their two sons, his brother (who is donating his kidney) & all of their family in your prayers. Thank you!

Those are the pix from last week that I'd promised to put up. Our girls & their new 'dos! Emma all dressed up in her big sister's hat & lei. Very cute!

Well, we had a pretty good weekend. Just getting the house ready for Emma's big party in 2 weeks (Josh is tiling our back porch even!) & the BIG birthday on Friday!

Emma is doing about the same. Still crying out in pain every so often and also signing boo-boo, sometimes pointing to her head. We spoke to the pediatrician on Friday. Emma's labs were normal, but they were still waiting on the trough level (the one that tells us if she has enough seizure med in her system). We're waiting until Monday after the labs are in to speak to Emma's neurologist. If the numbers are off, we'll adjust her dose (higher) & see if that helps what's going on. If the numbers are normal, we'll see what the neuro wants to do. We've been giving Emma Tylenol nearly round the clock, & that seems to help some of the really bad painful, screaming fits. I think she is having headaches, but she also grabs her arms sometimes too. It's been really hard for Josh & I, not being able to just make her feel better. Her sleep disturbances & waking continue & we're still seeing all the pre-medicine symptoms (which the neuro thinks are seizures). It's now been almost 3 weeks since her sleep issues returned, & 2 weeks with this pain. Well, I guess we'll know tomorrow (thankfully!) what to do. On a good note, her constipation is getting better. Also, her choking has stopped since we started her back on Simply Thick (to thicken her oral liquids), which is great, but it also means she is aspirating once again.

We've all been watching the Yankees WIN this weekend (in my new hat!). Josh & I agreed early on (lol!) that I'd root for the Cowboys, the Stars, & Mavericks (giving up all my NJ/NY teams!) AS LONG as we'd root for the Yanks. GO YANKEES!!

Sunday, May 7, 2006 6:09 PM CDT

I had mentioned a while back about my sister's friend & her husband (who was in need of a kidney transplant). Well, on Tuesday, Stephen will go in for his kidney transplant. Please keep Stephen, his wife Nancy, their two sons, his brother (who is donating his kidney) & all of their family in your prayers. Thank you!

Those are the pix from last week that I'd promised to put up. Our girls & their new 'dos! Emma all dressed up in her big sister's hat & lei. Very cute!

Well, we had a pretty good weekend. Just getting the house ready for Emma's big party in 2 weeks (Josh is tiling our back porch even!) & the BIG birthday on Friday!

Emma is doing about the same. Still crying out in pain every so often and also signing boo-boo, sometimes pointing to her head. We spoke to the pediatrician on Friday. Emma's labs were normal, but they were still waiting on the trough level (the one that tells us if she has enough seizure med in her system). We're waiting until Monday after the labs are in to speak to Emma's neurologist. If the numbers are off, we'll adjust her dose (higher) & see if that helps what's going on. If the numbers are normal, we'll see what the neuro wants to do. We've been giving Emma Tylenol nearly round the clock, & that seems to help some of the really bad painful, screaming fits. I think she is having headaches, but she also grabs her arms sometimes too. It's been really hard for Josh & I, not being able to just make her feel better. Her sleep disturbances & waking continue & we're still seeing all the pre-medicine symptoms (which the neuro thinks are seizures). It's now been almost 3 weeks since her sleep issues returned, & 2 weeks with this pain. Well, I guess we'll know tomorrow (thankfully!) what to do. On a good note, her constipation is getting better. Also, her choking has stopped since we started her back on Simply Thick (to thicken her oral liquids), which is great, but it also means she is aspirating once again.

Thursday, May 4, 2006 6:15 PM CDT

Things here continue to go well. Emma is still having her sleep issues again, & what may be more seizures (we're not sure?), she is doing the same odd behaviors as before the Trileptal. We're awaiting the bloodwork to see if she just doesn't have enough medicine in her system. She's also still crying out in pain throughout the day, but then she'll be fine again. It really stinks, because it defenitely looks like she is in pain, but we don't know where or why (her ears were clear at ped the other day). She'll sign "boo-boo" but either doesn't know where to point or doesn't understand. We went to have her DAFO's re-fitted, but because her foot has grown so much (YEY!), she had to be recasted for new ones (he remembered Emma from last time, he said "she didn't like this too much last time, right?" we agreed that was an understatement!!! She stayed still for them, but was very upset & crying. We were all relieved when both feet were done!). We let her 'pick' what design she wanted (sissy & I helped!). Her current ones are light pink with a sheep design. Well, these ones defenitely fit Emma's newfound toddler-dom!! They will be purple & have a kids & dog bright color print. Unfortunately, they didn't have a Blue's Clues theme...lol!

I mainly am writing today to ask for prayers for 2 families.

Morgan's parents got word from the geneticist today that she does in fact have mitochondrial disease--a severe Complex IV deficiency. Please visit their page to find out more about the visit & to leave words of support for them in the guestbook. Morgan & Emma share the same birthday, her mom is just so kind & has been a huge help with our Atlanta trip, they are a family that we hold near & dear to our hearts.
Morgan

Another sweet girl, Taylor, & her family also recently received a mito diagnosis. Taylor has Mitochondrial Encephalomyopathy ( Complexes I, II, III, & IV). Her family also has inspiring faith & have been very supportive of us on this journey. Please visit to learn more about Taylor & say hello in their guestbook.
Taylor

Please keep both of these precious girls & their families in your thoughts & prayers especially during this difficult time. While they have received a mito diagnosis, & it appears Emma is headed toward one as well, each diagnosis of mito is different. The outcomes & issues that each and every person with mitochondrial disorder must deal with is different. There is a broad spectrum. Emma is making great progress & as far as we can tell, she will continue to do so at her own pace. The UMDF website listed in our links has lots of good info on the various forms & symptoms of each mito disorder (& working hard for a CURE!).

All of the other CB families who are faced with mito have been so very supportive from the day we found out Emma needed a biopsy. Three moms in particular, Leslie, Sonya, & Vicki have been so kind to us & so very supportive. Even though they are faced with different forms of mito & are fighting major battles because of it, they still have shown us such empathy & concern. It truly is amazing! Thank you all!

Wednesday, May 3, 2006 9:17 PM CDT

Update...please go to journal history if you missed yesterday's (videos of Emma swinging!)...

My mom is home! Yey! We spoke this afternoon, & although she is tired from the surgery, she sounds better already. Her artery was more than 90% blocked, we are SO thankful these new docs moved fast. I'm saying many prayers of thanks tonight! Mom, the girls can't wait to see you & they are so happy you brought the gorilla with you!

Emma was so brave getting her blood drawn this a.m. (we went this a.m. instead for her trough test). They had a great vein in her left arm, put the needle in & lost it. They moved it around a bit, & it was terrible. Emma took a breath at one point & said "kay," it was so sad. The lab person said "oh, she's trying to be so brave, it's so sweet." Luckily, the next stick on her right arm worked right away. She was pointing to her arms all day signing 'boo-boo.'

Madi saw the ENT & PASSED her hearing test! YEY! It looks like some of her hearing issues are from fluid from her allergies...and some are from attention-issues (meaning she is not paying attention or zoning out). What a relief! Her adenoids are slightly enlarged, but that is all. So, we just go back in 6 mos. YEY!!!

Big Sis Madi so kindly gave Emma a makeover while I was getting her evening medicines together. Madi walked out, glitter ALL OVER her face, her hair, & her baby doll. Then came Emma, glitter all over her face & hair. YIKES! I was less than thrilled, you could say. I'm sure we'll be removing glitter from both of the girls for a few days (it takes several baths for it to all go away!). OH GIRLS!!!!

Our flights are booked, & we are now working on hotel arrangements. Thank you Leslie for all the help with that! Thanks, Dad, too for coming to stay & take care of Madi and Sam while we are in Atlanta.

Please keep Morgan & her family in your prayers. They are going to the geneticist tomorrow for the results of Morgan's biopsy.

(((HUGS))) to all!

Tuesday, May 2, 2006 3:10 PM CDT

My mom had her catherization today. She did need a stent, & the docs hope this one helps with the pain & problems she's had lately. She is resting comfortably & should go home tomorrow. Thank you everyone for keeping her in your thoughts!

We also received a call early this a.m. from Dr. S's office & we are a go (surgeon is on the books now). So, I'm making flight reservations after this.

Emma had OT & PT today. Emma worked on throwing & rolling balls, playing with blocks, & of course the swing (video!) in OT. In PT, she's getting a workout between working on stairs, ramps, & reaching up to help strengthen her core. She has a great time playing!

This is cute, you can see how concerned she was about her pal Blue taking a ride with her!! So sweet!!

I wish the sound had come out on these (taken from my cellphone), I'l take the video cam next week. Her laugh was actually what I wanted to capture for Josh to hear/see. It is this giggle that comes from her toes when she is on the swing!! And, the crazier the better, for Emma! Well, you can't hear the laugh, but you can see her WIDE smile!

Em has another upper resp infection & her constipation is still bothering her. We'll talk to the GI doc tomorrow to see if he has anymore suggestions. She's crying out randomly lately, during the day & night. We think it's a mix of teething & tummy issues. In a little while, she has to go get her labs drawn to check the levels of her seizure med (with the new weight gain, she may need a higher dose & she needs her liver & other things checked out while on the medicine). Thankfully the last 2 draws she had went pretty easily.

That's all for now. Madi has the ENT tomorrow (finally!) & on Thursday Emma will go get her SMO's checked out. Hopefully they can just put on an extender & refit them and not need to make a whole other pair. She still works hard at standing, even with regular shoes, she is still wobbly in the ankles & they still roll in. It's odd because her leg strength is so good, it's probably even above average (just ask anyone that's had to hold Little Tough down!). Anyway, we're hoping that before long that strength will increase & she won't need the smo's.

Monday, May 1, 2006 9:18 AM CDT

Please continue to keep my Mom (Nanny to Emma) in your thoughts & prayers this week. I will let everyone know how her catherization goes. Thank you.

Emma has another cold with a yucky cough. She's been up for the past couple of nights. She's still having problems with her bowels too. She gets so upset & we can't always tell what is going on.

Some GOOD news reports: Emma did GREAT in her bath last night. For more than a year now bathtime has been a HUGE struggle for Emma. We've tried every type of tub, position, etc. Well, this past week, she has slowly started to enjoy the bath. I even trimmed her hair while she was playing in the water. It was great seeing her splash & play with her tub toys!!

Emma is also trying so hard with her speech. She LOVES working with the flashcards & computer program (basically flash cards on the screen). She brings the cards to us, or her picture books & we go through all the words. We're doing a mix of signs & words. The signs she picks up very quickly & they are clear. A lot of her words sound the same, so it's still hard to decifer what she wants. She also doesn't use speech that often, so the signs have been great.

She really loves to dance lately too, it is quite hilarious. She & Sam were great buddies this weekend too. She got a doll comb & was brushing Sam's fur (although he just got his summer cut, so not much hair to brush!), he just sat there. I think he likes the attention!

I guess all the kiddos got haircuts this week. Madi went to the kid cuts place for her new bob! I'll take some pictures of all the new 'dos!

Friday, April 28, 2006 11:17 AM CDT

Well, we got a call from Anita at Dr. S's office first thing this morning. We are scheduled for everything for the week of May 22. Emma's party is on the 21st, so it will be a fitting celebration & send-off for us.

We'll head out to Atlanta on the 23rd, meet with pre-op, consult with Dr. S. & then Emma will have a metabolic test (to determine her caloric needs) on the 24th. On the 25th, Emma will have the biopsy as well as a spinal tap. She would be able to fly again on the 26th. We are awaiting final confirmation before we book our flights (will hear from Anita early next week, once surgery is booked with hospital).

I honestly didn't think I'd feel as nervous as I now am. I can't imagine how we'll feel the day after her biopsy when the real waiting begins. We are excited to meet with Dr. S, & we are relieved that we have our next step in place. I think also a part of us was hoping he'd say that Emma didn't need the testing, a little bit of wishful thinking I suppose. But, mostly, we are so glad that we pursued this route (Thanks to Vicki!) & that we are closer to getting our answer. Thankfully, I'll be busy the next few weeks with Emma's birthday, her party, & the wagon fund.

Thank you to Tracy G. & the Reynolds' family for your contributions!! Thank you Ann for helping us with the bracelets, bookmarks, & flyers. To each of you, all we can say is that your kindess is overwhelming! We are so thrilled about the wagon fund. Because of everyone's excitement & support, we are planning on donating more than we originally planned! We're now thinking we'll be able to purchase one wagon & either a second wagon or other riding toy (will ask Child Life team what they prefer), as well as some toys & DVD's. It is SO exciting!!!!

Well, the girls & I are headed out for a bit. Emma is feeling better (no more sniffles, but still fussier than normal, poop situation still not ideal!) & Madi is sniffly & coughing, but we think it's her allergies. I hate that she has so many allergies, especially at this time of year.

Please continue to keep the girls' Nanny (my mom) in your thoughts & prayers. She goes in next week for her catherization & possible intervention/surgery on her heart. We pray that things will look fine & that we can see her SOON!

Wednesday, April 26, 2006 7:48 PM CDT

Hello. All is pretty well here, both girls have the sniffles. We are hoping it is allergies. Emma's tummy is okay, I think things are slowly starting to move again.

Emma's Nanny (my mom) is going in next week for a heart catherization. She has had many before, most leading to angios or stents (she's had 1 bypass too). She's in Florida & my Dad will be there too, but it's still hard not being close enough to be there ourselves. Please keep her in your thoughts & prayers. Thank you.

Thanks for dropping in.

Lauren & family

P.S. To my Caring Bridge pals--a few sites (Rhyan's, Travis' & McKayla's--there might be others I'm forgetting) that I cannot visit. There is an Active X feature running & for some reason once we go to the page, our computer shuts down explorer. So, just wanted to let y'all know we have tried to stop by, but are unable to or to sign the gb. You remain in our thoughts!!! Take care!

Monday, April 24, 2006 4:51 PM CDT

GOOD NEWS! Emma's staph infection is on its way out the door! YEY! The lump & redness that we were concerned about is fine, the lump may be there for a while because of the abscess. We are breathing huge sighs of relief! For a few days there, Josh & I felt like it was going to be a repeat of last August with the pseudomonas.

We are going to have to start using the Simply Thick again (thickener for liquids). We're not 100% sure she is aspirating again, but she is choking a lot more in the past 2 weeks after she drinks. So, her doctor wants her back on thickeners. We also need to increase the amount of water we give her through the gtube during the day (to also help with her recent constipation).

Miss Emma is constipated, big time. We started giving her the miralax again over the weekend, ped said to increase the dose & see if it works. She hasn't been on it for more than a month now, after adding the L-Carnitor, she was going regularly. Not sure why it changed, but we're really hoping the miralax starts working soon. She'll be doing fine & then get real upset for a while or just want to be held. I know she is uncomfortable at times with it. My girls & their bowels!! With her & Madi, it seems either things are going too slow or too fast!!!

I posted some pix earlier today (see journal history), with Emma on a "test-drive"!!!! Thanks for checking in! Thanks for your prayers too--once again they worked!!!!

Monday, April 24, 2006 9:18 AM CDT

Hi there. Things here are good. We need to take Emma back this afternoon to the pediatrician. She had a fever last night (none this a.m.!) & her site is a little red. Nothing anywhere near as bad as last week--no swelling & the big circle of redness is gone, but where the head was is now hard & red. We're hoping this is just part of the healing process.

Other than that, Emma is doing great. She is really getting into the flash card 'drills.' She now will bring one of her picture books to us, just so she can go through it & try to name things. I think it's her way of having a conversation with us! You can see how happy she is. We're teaching her new signs as well & she's doing great with that too. What's interesting is that the words she has signs for, are the ones she's starting to be able to say (with more clarity & continuity). She is also becoming quite the copycat!! From facial expressions to actions, she just mimics everything. Very cute & funny!!

Here are some pictures from 2 weeks ago (before icky boo-boo!). I took her to the toy store after therapy so she could test drive some play cars. She LOVES car rides & cars, so Josh & I thought she'd get a kick out of these. Well, we were right! She loved them. She liked this one the best, just sitting in there turning the wheel. Shhh...don't tell her, but we're planning on getting it for her for the BIG 2nd Birthday!

I'll update later. Please also keep Nicholas & his family in your prayers. He too is recovering from the MRSA staph infection, but his was much worse. He was in the hospital for almost a week & they now need to make sure his little brother and parents do not have it too.

Friday, April 21, 2006 4:44 PM CDT

Just wanted to let everyone know that Emma is still doing good. Her infection site looks GREAT! So, we are very relieved that it looks like this treatment is working. Also (LOL!), I misunderstood the nurse on the phone, Emma has "methacillin resistant staphylococcus aureus" so, MRSA not MASA! Just thought I'd clear that up.

We're hoping for an easy-going weekend. Emma's cousin, Tomas had his tonsils & adenoids out today, please pray for a SWIFT recovery. His sister will be getting them out next month as well. And, Emma's other cousin Joseph is hoping to avoid the tonsilectomy, but he just had strep again. Madi will be seeing the ENT next week (had to push it back with Miss Em keeping us on our toes!!), we're hoping she's not going to join 'the club' too. So, please keep our precious nieces & nephews in your prayers, as well as all of our fellow Caring Bridge families. THANK YOU!

Have a wonderful weekend!!

Thursday, April 20, 2006 4:25 PM CDT

Thanks again everyone for your prayers.

Emma continues to do well, still a bit fussier & sleepier than normal BUT her little body is fighting big time. The doctor's office called & Emma does have the resistant strain of staph (MASA). My heart sank when I heard that, BUT, because she is looking better & her site appears to be healing, we are going to continue with what we are doing. Hopefully the infection will go away with this course of treatment. If anything changes or any new areas appear, she will need the IV antibiotics.

Please pray that Little Tough continues to do so well! THANK YOU!

Wednesday, April 19, 2006 8:52 PM CDT

Almost in the clear!! We went back to the doctor today & she is happy with how Emma's infection looks. A LOT of the redness & swelling has gone down, although it is still tender. It looks like the antibiotics are working (YES!). We are still awaiting the culture results (prelims). Emma has more 'satellite' infections (not cellulitis like her leg, but small red bumps, doc said they are hair follicles that are slightly infected/irritated), so we now have some topical antibiotics to treat those.

We are SOOOO relieved to see Emma's leg clearing up!! She was very sleepy today, maybe another growth spurt? Is that possible? LOL! We had dinner with Honey & Pops, the girls had a fun time.

Thank you for checking in on Emma & for all your extra prayers for a speedy recovery! THEY ARE WORKING!! THANK YOU!!!

Monday, April 17, 2006 10:08 PM CDT

Please keep Emma in your prayers.

We went to the doc today, because Em had a rough night (crying in her sleep) & was just not herself. We thought she had an ant bite on her leg, it turns out it is a strep or staph infection & abscess. They drained it & took a sample to culture. She has begun strong antibiotics & we have to soak it several times a day and keep it covered. Once the culture is done (a couple of days), then we can be sure these meds will treat it. We are praying Emma will not need IV antibiotics.

She is resting comfortably tonight. I think she did get some relief after they drained it. The side of her knee is so swollen & red, it is HOT too. I can't imagine how it feels to her.

She needs to stay home for the next 3 days, at least until the preliminary results are back on the cultures. So, no therapy or orthotics visit tomorrow.

Again, please pray that this medicine works & she'll start feeling better SOON. Thank you.

On a GOOD note, the neuro's office called & her sodium levels are fine (YEY!). Also, Emma weighed in at 25 pounds. YES, 25 POUNDS!!! WOAH! She is doing GREAT! In fact, her doc said that if this gaining keeps up, we'll have to CUT down on her calories!!!! WOW--like Dr. K said, she'd never think she'd be telling us that about Emma. You should see her growth chart, it has JUMPED up. Think about it--only a few short months ago, Emma wasn't even on the chart!!! Little Tough, YOU AMAZE US!!!

Also, if you missed our Easter pix, please check out the journal history. Thank you.

Monday, April 17, 2006 8:45 AM CDT

Happy Monday! We had a really nice time yesterday. The kids all enjoyed themselves & the food was GREAT! I'm glad Denise sent us home with leftovers! YUMMY! Here are some pix from our fun day...

The Cousins (doesn't Emma look like a BIG KID now???)

I promise we did NOT pose them for this picture. It was one of those moments we happened to capture, Madi pouting & her cousins & sis checking on her. Many giggles ensued after this photo!

Our Madison & Emma...

*********************************************

Emma has speech this morning & then we go to the pediatrician. She still is not feeling well & was wimpering & crying out in her sleep all night. She's a little shaky today too. I think her cold is better though, her cough & congestion are much better. We also will get the referral to Dr. S & get that ball rolling.

Tomorrow, Em has OT & PT and then we'll go to the orthotics place to see what they'll do about her DAFO's. We're hoping they can just put an extender on & reshape them a bit, otherwise she'll have to be re-casted.

It is going to be 100 today. YES, 100! It was 98 according to my car yesterday, the bank's thermometer said 104. I can't believe it is this hot, this early.

Thanks for checking in on our Little Tough. She really enjoyed herself this weekend, & really loved the egg hunts. There are some more Easter pix in the journal history & of course the latest updates. (((HUGS)))

Sunday, April 16, 2006 10:27 AM CDT

Some pictures of our morning... We are off to get dressed & head to Denise's. Happy Easter!!

Saturday, April 15, 2006 9:47 PM CDT

Happy Easter!

We hope everyone has a wonderful weekend. We had a fun day today. Emma is still not feeling great, but she's doing a little better. We decided to go out for a bit today, it has been a long time since we've gone out as a family. We had so much fun. We ate at Maccaroni Grille for lunch (Emma even ate some pizza!) & then headed to the mall. Emma's never had a picture taken with Santa or the Easter Bunny (she was either always sick or too upset). She seemed very excited going into it, but once put on the bunny's lap, she was not happy! We got a kick out of the picture though--it captured a very real moment!! LOL! I'll try to scan our real picture on here, it is cute, despite Emma's tears!! This one is a little blurry, taken by Josh's cell phone. We are spending the day with Denise & Julio & Emma's cousins. It should be lots of fun.

Oh! And, some exciting news. I was in contact with Dr. S's (from Atlanta) office on Friday. We have the ball rolling now on having Emma's biopsy (muscle/skin) done there. He is one of the best, so we're hoping insurance goes through & we can get there (as soon as May they said!!). We'll still keep our appointment with Houston, although we may push it back until we get the biopsy results. Houston has a mito department, so they would be a good point of contact within our state (& only a few hours away!). Will keep everyone posted!!

Have a blessed day! (((BUNNY HUGS))))

Thursday, April 13, 2006 9:24 PM CDT

Emma does have an upper respiratory infection, but thankfully her ears looked ok. She's doing a little better as far as cough & congestion go today. Last night she was choking & having trouble breathing, so I did a treatment. About 30 minutes or so later, she was up & really irritable and hyper. She just couldn't get comfortable & was up for almost 4 hours. Yesterday & today she just has not been herself. Very fussy, falling a lot, wanting to be held...of course as a mom you can't help but worry. It's most likely just her cold, but I'm hoping she is back to her ol' self tomorrow!!

I can't wait to show Emma her page tomorrow--she will be thrilled to see so much Blue!! She just LOVES everything Blue's Clues these days. Nanny sent her an adorable little Blue in the mail the other day, she won't let it go!! She gets so excited when Steve (or Joe!) uses signs...she lights up! Anyway, I know we are a month away, but if I didn't update her site tonight, it may never get done! We are looking forward to celebrating the BIG TWO with our Emma!!

I've started planning her party (guess the theme?!?!), I hope she enjoys herself. We've gotten such great responses about the wagon drive & charity donations. Our teeny-tiny way of giving back, thank you for doing that for us!!

We are all looking forward to this weekend. Tomorrow night, Daddy & Madi will go camping again for Presley's birthday. And, of course Sunday will be a great day too. I think Emma will get a kick out of an Easter egg hunt!

Thanks for coming by...

Monday, April 10, 2006 9:43 PM CDT

Hi everyone.

Emma is doing okay, she's been fighting a yucky cold for a few days now. We'll see the pediatrician tomorrow to make sure it's not in her ears. She has lots of yucky boogers (drive her crazy!!) & the cough started today. Hopefully it will be completely gone for Easter this weekend.

Em had speech today & her therapists discussed her eating & speech issues. Her speech therapist feels Emma has Developmental Apraxia of Speech, & after she explained the signs of it, I agree. Emma can say some words, but there is no consistency with them. She can mimc parts of some words (ending or beginning sounds), but has a hard time initiating words on her own. This leads to a LOT of frustration. We also talked about Emma's lack of eating & odd eating habits. The ST said her jaw movement & chewing has really improved. She is still choking some, but that too has improved a lot. We've discussed some new forms of therapy. For Emma's speech, we will start showing her flash cards & a cd rom with pictures. A couple times of day we will do 'drills' where we show her the picture & say the word, we'll use familiar words (objects around the house, pictures of us, etc.) & hopefully with time, these words will come to her easier. We are also using new cues/signs that help her (we hope) figure out how to make sounds & also flash cards for verbs. For the eating, our ST has put off doing a more behavioral form, in which we sit Emma in a chair & give her some food (spoonfull, or just touch the lips) & then reward her, over and over again. This would be intense & she would probably scream for the first few sessions, our ST said. She waited because she just wasn't sure it was okay for Emma.

We saw Emma's neurologist today & discussed all of these things. He feels that Emma's lack of thirst & hunger is a neurological disorder and that we should NOT do aggressive therapy for eating. He said that could be very harmful & that we need to continue doing what we are doing, but realize she will get almost all of her nutrition through the tube. He said to be very gentle about it. At least now we know why our baby won't eat, of course it's frustrating knowing we can't do too much about it. It also, though, takes a little pressure off of Emma & the rest of us, who for months now have been unsuccessful in trying to get Emma to consume food & fluids enough to sustain her. Thank goodness for the gtube--& woah, she is just gaining & gaining!!!! As far as her speech, he agrees with the apraxia. He also feels strongly that we should continue with the sign language. He said this will not hinder Emma's speech development & will help deter a lot of frustration. It was a good appointment, I learned a lot. He is happy with the changes we've seen with the Trileptal (did I mention Emma is now sleeping through the night--most nights--& usually taking a nap during the day?? She's NEVER had a sleep cycle of any type!!). She has to get bloodwork done to check her sodium levels while on this & we go back in 3 months.

I'm going to change Emma's page in a few days, get it all spiffy (lol!) for her BIG birthday. We have decided that in lieu of gifts, we are going to raise money to purchase a new wagon & dvd's for Medical City Children's. I'll post more info in a few days.

Emma has OT tomorrow & the ped. Madi will probably see the ENT. She saw the allergist last week & is allergic to cats, dust, some trees & weeds. He said her tonsils are huge & sent her for an Xray of her adenoids. The ENT also has to check her hearing (she failed her 5 yr well visit test). It's never boring around here!

Hope everyone has a great week!

Happy Birthday to Joseph S.!! Please keep him in your thoughts & prayers tomorrow as he is having a brain MRI. Thank you.

Congratulations to Elizabeth & Keith!! "The best is yet to come..." Enjoy every minute of it!!

Congratulations to new big sisters, Hannah and Rebecca and a BIG welcome to their new baby Sister Rachel Emily!!

"Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith."
Henry Ward Beecher

Wednesday, April 5, 2006 11:33 AM CDT

Updating the page a bit...

Friday, March 31, 2006 5:26 PM CST

Well, things here are great. Emma is doing fine, a little more irritable lately--but that's not related to the surgery. She's been fussy & having some hard sensory days, but other than that things are great. She is healthy--BIG YEY! We've been playing outside TONS...this weekend Josh will finish their play area & the girls will just love it! We're trying to be in the outdoors as much as possible, before the heat becomes unbearable. It's over 80 today--HOT! Emma gets wiped out & can't take it. Thankfully, we have a screened-in porch, with a good breeze. We've been eatings lots of meals out there & dancing to music (Emma is our Tiny Dancer!!!).

We received the full report from Emma's ABR test & everything is 100ormal. We are SO very relieved. Honestly, Josh & I were holding our breath because nearly every other diangostic test Emma has had shows something wrong. So, this was very, very good news! They advised that Emma have a behavioral audiological exam (think that's what she called it!), so I guess we will see about setting that up. The audiologist & ENT feel she could have a problem with auditory processing. When we do the hearing tests in the booth, Emma fails & she does not respond to sound all the time. So, we'll talk to her ST & try to see how best to deal with this.

Here are some pix from last weekend. Thank you everyone for checking on Emma, your prayers & well-wishes. They mean so very much.

Our FIRST tree (in our backyard!)!! Daddy & his helpers planting a willow tree.

A very short clip (battery ran out!) of Emma. I think you just click on it to play. Will try & get some more this weekend. I know it is very exciting for our family miles away to see Emma walking!!

Hope everyone has a wonderful weekend! Take care!

Tuesday, March 28, 2006 5:24 PM CST

Emma did GREAT today! She passed the ABR test! YEY! We'll get the final report in 2 weeks at our follow-up appt, but the preliminary results appear her hearing is A-OK!! So, that means the hearing loss we observe is sensory-related (something that with time & therapy she can overcome)...PHEW!

We were there way longer than planned...they ran a little late getting started & then it took Miss Emma a loooong time to wake up. She LOVED the Blue's Clues balloon Daddy got her, when she woke up & spotted it, she lit up!! Honey (Emma's grandma, Josh's mom) came with us--THANK YOU!! She was a great help & wonderful company for the ride to & from Dallas. Josh came too, but had to head right to work after. Anyway, everyone fell in love with Emma! She was a very brave girl (even had to get a shot before surgery--ow!!) & got LOTS of stickers!!!! She had goofy juice before time, so that was a comedy show for Josh & I. Her eyes were half open & she kept flicking her tongue around in her mouth. FUNNY!! Here's a picture:

Thank you everyone for checking in, for your well-wishes & prayers! We're so happy she is home tonight & doing so good. Now, hopefully no more ear boo-boos!! (((HUGS))) to all!!!

Monday, March 27, 2006 11:05 PM CST

Hi everyone. Late entry. I have to turn off Emma's pump (feeding tube) at midnight, so I'm up until then. YES, we are ON for tomorrow! Thank goodness!! Surgery is at 10, we arrive at 8:30. They'll do her tubes first & then the ABR test. The good news is that we should get the ABR results right away.

We are looking forward to having 2 new (& GOOD!) tubes in Emma's ears. I will update sometime tomorrow...

Please say an extra prayer for Emma. As much as the tubes are a minor procedure, she is still going under anesthesia & of course that gets the nerves going. She'll be under for a lot longer with the ABR (think they said that takes about an hour), than she would for just tubes. I know she'll do just fine, but extra prayers for Em are ALWAYS appreciated!!! THANK YOU!!!!

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Emma has been fever-free since Friday (yey!) & feeling better each day. We had a wonderful weekend, I will post pictures soon. We planted (ok, Josh dug while the girls & I watched...lol! We did water them!!) 2 trees & Josh has started leveling an area for the girls to have some outdoor play equipment. Emma has just been loving the outdoors (Madi too, of course!). Our neighbors can't get over how much weight Emma has put on & how her personality is changing (whether it is the L-Carnitor or something else, or a combination--she has this new energy & just a spark about her). They all just love our girls, & I know they all have a special place in their hearts for Emma. We are blessed with some great neighbors. Will post pictures of the girls playing outside & the yard soon. Take care.

Wednesday, March 22, 2006 9:51 PM CST

Well...surgery is off. Emma saw the ENT for her pre-op today & both ears are infected. SO...she is on antibiotic & we are rescheduled for Tuesday. The ENT was glad our ped did the shot yesterday, that should kick out the infection & she should be fine by next week. Luckily, he called the audiology team & they were able to rearrange their schedule...so, Emma will still have the ABR test as well. YEY! Her ENT said we had to do the tubes in the next 2 weeks, because Emma just keeps getting sick. I was afraid we'd end up not being able to do the ABR. Waiting until Tuesday is not bad.

We're relieved that Emma has started with some cold symptoms today, it's scary for her to have a high fever (for her, anything over 99 is considered a true fever because her body temp runs around 96-97) & no clear reason. The only times Emma spikes a high fever has been when she's seriously ill. Needless to say, Josh & I barely got any sleep on Tuesday night. We were very worried about our baby. BIG sighs of relief here!! She is feeling a little better--fever not as high today, but she is still pretty sad. She mostly just wants to be held. She was snuggled up on the couch tonight (her new favorite spot! With a blanket!!) & I had to take the picture. How sweet does she look?

Thank you everyone for your kind thoughts in our guestbook. I'll update on Monday to let y'all know if we are for sure a go for surgery. TAKE CARE!

Tuesday, March 21, 2006 6:34 PM CST

Hi. Just a quick note to ask for some extra prayers for Emma. After her bath last night she was shaking real bad (we always bundle her up, because of her body temp issues), so I checked to see how low her temp had dropped & instead she was 102. We spoke twice to her doc last night & thankfully with round the clock Tylenol & fluids, we avoided the hospital. The fever never really broke, she was so sad looking. All this & no symptoms, which is scarier than if her nose was running, etc. So, the docs did lots of tests today--quick tests ruled out strep & a UTI, her sugars were ok, & her CBC is looking more viral. BUT, with her surgery on Thursday, the doc went ahead & gave a Rocephin injection to ward of a bacterial infection. Poor Em got poked & prodded lots & we were at the pediatrician's for almost 3 hours.

We see the ENT tomorrow. IF Emma's fever goes away, she can still have surgery. Please pray this does happen & that she is feeling better SOON...we want Emma smiling again AND we've waited a while for both the surgery & ABR test. THANK YOU!!

P.S. If the grahics are messed up it is because I'm working on putting up some Easter stuff. Take care!

Tuesday, March 21, 2006 6:34 PM CST

Monday, March 13, 2006 9:14 PM CST

First, let me say THANK YOU for all your kind guestbook entries & emails. They have lifted us up & it is just amazing to feel the love & support that surrounds us. We're doing better, we've had a few days to let things sink in. It wasn't so much the seizures, it was just that Emma needed another medicine & to deal with something else. We had a brief pity party, but then went back to celebrating all the wonderful things that have been going on with Emma lately--the increase in strength, her new bursts of energy, her personality (playing drums on ALL the pots & pans I know at 8 am this morning!!), & her weight gain. Her smile & walking around with her arms spread out saying "ug!" Well, that's enough to make all the stress & frustration melt away! All the 'bad' things seems like such tiny things, seeing her tough it out. Emma is just amazing, & she continues to teach us what's really important each & everyday.

A good news update!!

Emma weighs 23 lbs, 5 oz AND measured 29 3/4 inches long today!!!!! YIPPEE!! She had her follow-up with the GI doc & he is thrilled with her growth. We are too!! I suspected she had put on some more weight (trust me, my arms, my back, all feel it...it's all worth it!!), her rolls almost have rolls. LOL! I was so happy to see 23!! AND, about her height, that's great. It's so nice to see your baby GROWING!!! FINALLY!!! So, he said to keep going with the tube feeding, 30 oz a day is plenty. That we can handle! We don't go back for 6 months!! That is awesome!! As much as I know originally we thought the feeding tube was a temporary fix, & more and more, it seems more permanent...it is just a blessing to see Emma growing & thriving! I can't tell you how happy we are!

We have decided to not go to Dallas & instead head to Houston only. This is after talking to Emma's doctors some more. Houston is better suited for what Emma needs, and her docs all seem to feel Emma has a mito disorder. We're also keeping Atlanta in our minds as well.

Our afternoon was very nice. The girls & I went to Hobby Lobby & picked up some cute garden decorations for our flower beds. We got back & set the items out, talked to our neighbors, the girls played with chalk, Emma got into lots of mischief--it was great!!!

Oh--poor Emma has a BIG lip... We were playing outside yesterday & she fell (she is still falling a lot, inside not such a big deal--on concrete--YIKES!) on the driveway & scraped her upper lip. Thankfully, her teeth are fine. Her lip bled just a bit & now it's just swollen. I did manage to get her to eat some grape ice pop after it happened (she usually hates them). Anyway...it's never boring around here!!!!

Hope everyone has a great week. So far, so good (no bad side effects) from the seizure med. She was sleepy today, but that could just be Emma having a sleepy day. Emma will see the ENT next Wednesday (pre-op) & then surgery on Thursday. Take care!

Friday, March 10, 2006 5:08 PM CST

Well, nothing like a trip to the neuro's office to suck the wind out of your sails. Sorry, trying to keep some humor here. We went to Emma's neurologist today to disuss the changes on her EEG. It showed 2 epilepthial (spelling?) spikes, they are fairly certain they are coming from the left temporal lobe (again, all of this is what I remember from today--Josh has the notes...think I'm getting this right). He gave us two options, the first is to trial anti-seizure medicine for one month & see if Emma improves or admit her to the epilepsy center for monitoring. The latter, he said, could mean we'd be in the hospital for up to a week. He suggested the first, Josh & I agreed.

She is going on Trileptal for one month (we will slowly up her dose over that time), if we see improvement then she'll remain on it & we'll know for sure some of the odd behavior (staring, freezing, twitches, etc.) are seizures. If we do not see any changes, then we'll have to do the study at the epilepsy center to see what is going on, how many (if any) seizures she has while awake, asleep, etc. She might need a different medicine. Our doctor said that with Emma's developmental delay, she has a higher risk for seizures. So, that combined with these spikes he feels there is seizure activity going on. Apparently 5-10% of the population can have these spikes & be okay, but he doesn't think that is the case for Emma. Our visit was long & he answered all our questions, we were not rushed & that was really nice. He showed us the EEG & explained it in terms we could understand (as best he could!).

We go back in one month. We're hoping the medicine works, & Emma won't need to do the longer study. Josh & I are letting this sink in...It stinks that Emma is dealing with this, but I'm glad we are now able to help her. Josh & I have always felt that Emma had seizures as an infant--her head dropped several times & she had some other odd behavior. It's been harder as she gets older--to know what is sensory, what is toddler behavior, or what could be a seizure. I guess it's still settling in though--this is Emma's third EEG & the other two were fine, except for her brain wave rhythm...so we honestly didn't expect anything else to show up. To see that it happened twice in a fairly short period of time is very surprising & scary.

Thank you everyone for keeping Emma in your prayers--we appreciate them & we know they have made such a difference. She is amazing us so much, all the time. She's having a tired & fussy day today, but she's still cute as ever!!!

Oh, as a great pick-me-up this afternoon (yikes, medical supplies are better than flowers these days! not good!! lol!), Emma's medical supplies (from the new company) arrived...4 days earlier than expected! ALL of the supplies were there, they were very generous with IV sponges & syringes. Yey!! BUT, the KICKER is the FIVE cases of Neocate we also received!!!!!!!!!!!!!!!!!! Okay, trying not to get our hopes completely up, but so far it appears the ins. company is going to cover it through this new home health supplier. It would be AMAZING if that is the case. That will save us over $600 per month!!!!!! WOW!!!!!!!! So, we're praying this is really going to continue. Either way, once Emma has a diagnosis of an IEM, they will cover the Neocate. It would be WONDERFUL if it's covered starting now instead of a few months down the road!

Have a good weekend. The weather should be nice here, so we're hoping to get outside. Thanks again for checking in on Emma. She sees the GI doc on Monday (follow-up), & then tubes the following week. Take care.

Thursday, March 9, 2006 4:35 PM CST

Hi everyone! Thanks for checking in on Emma. We spoke to the geneticist, & YES, all this good stuff is from the carnitine. WOOHOO! He's so happy in fact, that we are going to 1/2 her dose, he said she has now repleted her stores, so we can just maintain at 1/2 the dose. This may help some of her loose stools (then again, not taking Miralax has been great, so hoping it still keeps things going, just not so much!!). We are just so thrilled, Emma is really looking great as far as her strength & walking. What a blessing!!

I need to ask for some prayers. Our neurologist's office called about Emma's EEG results, all the secretary would say is that there were abnormalities & that Emma needs to be seen. She said Dr. Elterman wants to show us where the abnormlalities are & discuss what we need to do. Of course, we're not sure at all what that means. Her EEG's have always been abnormal because she does have a slower brain wave rhythm, but he's never needed to see us about that. Not sure if it's seizures or something else...not sure what else aside from brain waves & seizures the EEG could find. So, we are anxious...our appt is at 11. Please say some prayers for our Emma. I'll update once we are back. Thank you!

On a side note, Emma did really good during the EEG. Poor thing, her head was soaking wet with sweat that the leads kept sliding off. It took forever to get them all on & her head wrapped. But, she fell asleep very easily & did great. I wish I had my camera--her hair after was quite a sight! Thanks Honey for helping me with the shampooing!!!!

Tuesday, March 7, 2006 3:22 PM CST

Hi! Well, good news to report! Emma is doing great...not only has she NOT been congested or coughing for a few days, she is doing wonderful in other areas. We are not sure if it is the Carnitine kicking in, or just Emma, or a combination of both...but we are thrilled whatever it is! She seems to be stronger, her limp is less pronounced, she is trying to talk more, she is engaging more with us! It's been great! I think in addition to the L-Carnitor & Emma, the Prevacid has also helped her & the fact that she hasn't had an infection for a week is making her feel better & therefore able to do more. When she is sick, it just wipes her out--more than the average kid. So, she's feeling good & letting the world know it!

I wasn't sure if it was maybe just Josh & I...and maybe a "placebo" effect (lol!), but even Emma's PT was amazed today. She could see & feel the difference. Emma has an energy about her & is just ready to go, go, go. She is practically RUNNING!!! She still gets worn out after playing, but not as often as before. YEY!!! Also, she is no longer constipated, she hasn't needed her Miralax since we started the L-Carnitor. Not sure if it's related, but we're happy she's been regular without the Miralax.

Em is having more sensory issues, we're trying to help her out with this. We think it might be somewhat due to her feeling better...she's more active & aware of more. So, we just need to help her nervous system adjust. She LOVED swinging at OT today. It is a platform swing...when she first started OT she was petrified of it. Then she'd get on it sitting on a beanbag chair...then just with the special blue padded "box" on it. Well, now, she just crawls right on it, holds on & loves the ride!! She just laughs so hard. Bringing a camera next week so you can all see her big goofy smile while swinging!

Emma is doing better with eating. She is drinking around 3-5 oz per day of juice. And we are trying some non-thickened juice/water with a straw (slow!). She seems to really like pizza! Oh, and we discovered her new love of DORITOS yesterday at Speech. She was sucking off the coating of the Doritos & then eating them!!! Her ST joked that we'll meet at a Mexican restaurant next time...lol! Emma is one spicy girl--in many ways!!! We're not being as vigorous with getting Emma to eat all the things she should be eating (for her age). The ST & our pediatrician feel she is doing better getting most nutrition from the tube feeds, so we're just exploring snack type foods that Emma likes & maintaining her oral motor skills, keeping her interest in food, etc. This way once we know better about what type of diet is best for Emma, we can incorporate that & then really push to get Emma's oral intake up. I have to say, it's kind of nice taking a break from that...it can be tough seeing your baby just LOSE it when you are trying to feed her. So, for now, she's on the "College Diet" (lol!), pretty much pizza, Froot Loops, & chips!! And, we can't forget the lollipops & sweet/sour candy gel!! I never thought I'd be so happy that my toddler was eating some junk food!!!!!

So, lots of good updates from here. It's really just what we needed (Thanks Little Tough!! You always help Mommy & Daddy get through the rough patches, huh?)...we have appts in Dallas every week for the next 5 weeks. Emma has her EEG tomorrow...wish her (& us!) luck! I'm just praying that she sleeps and that she does okay with the leads on. We won't have results until Friday or next week.

Cute Emma story: For Valentine's Day, we got her the board book, HUG. She loves monkeys. Well, on each page, the only word is HUG until the end. So, she can now say "ug" for "hug." So sweet--she walks around the house with her arms stretched out saying "ug!" and has to hug everyone who is around. Melts our hearts!!!!

I'm going to add this flyer into Em's site above tomorrow. But wanted to get this on here today. If you can, wherever you are, please donate blood. It is so very important. I've met so many children who have benefitted from it & Emma herself came very close to needing blood this summer. It is vitally important. THANK YOU!

Wednesday, March 1, 2006 10:22 PM CST

Okay...check out these thighs!!!! I don't think Emma has ever been this chubby!! At times, she'd have a double chin, but her body always stayed fairly thin. It's awesome to see her packing on the weight...we are just loving seeing her pudge up! Thought you'd like to see!! Took the pix with my phone, so there a little fuzzy...but you can still see those rolls!!!!

Well, I have to applaud Emma for how well she did during her dentist visit. Granted, she was less than thrilled to be there & screamed...but was still & let them clean her teeth (think she liked the taste of the fluoride!). The entire office was decorated with fish--so Emma LOVED that! Everything looks good--her teeth are coming in very slow, & some out of order, but it appears the teeth ARE there. So, they will come eventually. In fact, this could be what a lot of her recent fussiness is about. She seems to lose it these past 2 days if we go more than 6 hours without Tylenol. We'll go back every 6 mos, of course, & they just told us to make sure we're brushing real well because when you have a gtube, you tend to build up plaque more.

We saw Dr. K yesterday, & Emma's ears look ok. Some fluid in one ear, not much. We're going to put her on the drops (she hates!), just to try & avoid an infection. So, still unsure exactly why she's more irritable & having more sleep problems, hopefully it is the teeth & they'll break through SOON!

It was HOT today...97 degrees!! I guess March came in like a JUNGLE lion (haha)!! Well, go figure, tomorrow it will be in the 60's. I have the A/C on today...& will probably need the heat tomorrow night. The saying here in Texas is "If you don't like the weather, wait 5 minutes..." or something like that (sorry native Texans, this Yankee may have messed that one up! LOL!). Well, I'm glad it's cooling off--Emma just cannot take the heat.

Miss Emma JUST now (after 10pm) fell asleep...have been trying since 7:30, actually she was so wound up, I thought she'd be up until midnight. So, I guess I'm lucky!! Hopefully she will sleep through the night. Have a good rest of the week & weekend! Thanks again for coming by & checking up on Emma. Thank you to everyone who has signed the guestbook, we love reading it!! (((HUGS)))

Monday, February 27, 2006 5:33 PM CST

Updated some of Emma's upcoming appts...wow, that girl is busy!! She has a lot of her follow-ups with her specialists in the next few months & some new appts. The good news is we are up to 6 or 12 month intervals with so many of the doctors, that helps a lot!

We see the dentist on Wednesday, it was one of those appts we kept meaning to make & something would come up. I'm anxious about it, she's so orally defensive, I have no idea how they'll do anything. Emma's teeth came in a very odd order & she is still missing several. So, I'm interested to see what the dentist tells us.

Also, Emma is doing some strange things as she goes to sleep, for about 2 weeks now. She startles (like an infant does, arms & legs fly up) & her body twitches randomly. So, her neurologist is going to do another EEG. Not looking forward to that, as Emma hates getting the leads on & off. That will be on the 8th.

Poor Emma is not sleeping well at all lately. We haven't mentioned this, mainly because of the possible criticism it may receive (lol)...but we moved Emma's crib into our room more than a month ago. She & I had been sleeping on the recliner, & putting her to sleep in her room was just not happening. It's not a separation thing, she'll go willingly into her crib, it's that she wakes up so often throughout the night. Well, she still wakes up a lot, but sees Josh & I so either plays in her crib or goes back to sleep. But, this past week, she is up a lot during the night (12:30 am until 4 am last night) & very irritable. Last night, she was banging her head, hitting it into the crib rails. I kept hugging her & we tried different things. Finally, it dawned on me & I asked her if she had a boo-boo. She signed "boo boo" & I asked if it was her head. She put her head down on me, as if to say "yes!" so Josh got her Tylenol & within 30 minutes she was (finally) back to sleep. She'll see her pediatrician tomorrow to see if its her ears.

Hoping for some good zzz's tonight...

Wednesday, February 22, 2006 10:02 PM CST

Well, Emma is resting much better this evening than last night. She had Josh & I very worried last night, she was coughing & wheezing more, and having difficulty exhaling. She slept good from about 12 - 3 am & then was up until 8 am. We went back to her doctor, & her lungs actually sound better (phew!), but they switched her medicine. This new one has an expectorant in it, so it will help loosen things up more. It is helping a lot.

We also got her L-Carnitor rx, so she started that today. Her doctor officially diagnosed her as having childhood asthma today, based on the past few months of wheezing episodes & URI's. There's a lot of asthma on both sides of the family...so it's not a big shock. At least now we know she needs to be on maintenance treatments, which may help reduce all these infections she gets.

As you can see above, finally have some dates for things. Was hoping her tubes would be done sooner, but the audiology team didn't have any openings for the ABR test until the 23rd. They are going to keep Emma on antibiotics until then, so she should not get another ear infection.

ALSO...Children's called me back today (yey!) & they can see Emma on April 4th. I also got a hold of Houston, and they scheduled us for June 22nd. We are keeping that appointment, so we have it just in case. There are some reasons why Houston may be better for Emma, and they may be able to handle more testing. So, we'll see. I'm glad someone can see us that soon...we're anxious to getting the ball rolling on that. Thank you to everyone who has helped give us contact info, tips, advice, etc. for both Children's & Houston.

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Please keep Morgan in your prayers, she is having surgery tomorrow. Please pray that the surgery goes well with no complications & that Morgan is out of the PICU and home as soon as possible after her surgery. Thank you.

Tuesday, February 21, 2006 5:43 PM CST

Thanks Elizabeth for the link! Check out www.plotkindesigns.com/tynietoes for some adorable tees. Emma will be modeling the other 2 she got in the next few days as well! After last week & all, seeing her smile with that t-shirt on...well, what can I say? A pick-me-up doesn't get much better than that!!

Emma is doing good today, despite her cough getting nastier. So, we're upping her breathing treatments & adding a new med. She was coughing all night. It's a lot like her RSV cough--where it sounds like she's getting stuck on mucus plugs & wheezing. It's a really icky cough. Hoping the medicine helps her soon.

Emma did really good in therapy. She tried to escape from OT a few times...lol! In PT, she had a blast...working on stairs AND being pulled on a scooter while holding onto a hula hoop (major ab work!). She was very willing today to try out new things & had fun. She had a BIG proud smile the whole time--that was awesome!! Her therapists are just so wonderful, always coming up with new & fun ways to work with Emma.

We also discovered that Emma picked up a knack for tennis. Josh remembered that on Hi-5, they play tennis on a skit. Well, she REALLY paid attention... She grabbed a BIG paddle & a tennis ball, and began swining the paddle! It was hilarious. She is such a determined little girl!!

Another reason to be in a good mood today is that we have made contact with both Dallas & Houston. So, now it's a matter of who will see Emma first. I'm hopeful about Houston, after an email from their staff. My ped said that since she has these abnormal tests, plus the metabolic acidosis, the hospitals may be more apt to see her sooner. We're praying that's the case.

Thanks again for coming by! (((HUGS)))

Monday, February 20, 2006 8:21 PM CST

Hi Everyone,

(Long update! Chatty Cathy here...sorry!!)

Thanks again for the kind guestbook entries, emails, information, & support. It has been amazing...it still leaves me speechless at the love we see from so many--people we know & even those we don't. We are in awe of it & appreciate it so very much. THANK YOU!!!

We saw Emma's pediatrician today & first of all (GOOD NEWS!) Emma is over 22 pounds!!!! YEY!!! We knew she was gaining--she has chubby thighs (a first!!) & her 2nd chin is back. LOL! GO EMMA!

Dr. K will get Em's records sent to the endocrinologist & compile for genetics team(s). We should be able to see the endorcinologist in late March/early April. That will shed some more light, we think. We are going to attempt to get into both Dallas & Houston at this point...the doctors are wanting things done soon. So, wherever we can get in sooner is where we will go.

Emma is going back on Prevacid, we're hoping this helps some of her wretching & other reflux-like symptoms she is having. She was a CHAMP getting the granulation tissue removed. It was really bad this time. I HATE THAT! Hoping & praying this really is it. Emma's also back on breathing treatments because she's wheezing.

ENT should have surgery date for us tomorrow--should be either the 2nd or 9th. Will keep everyone posted.

She was stinker in speech today! They had her painting with pudding & sprinkles...and she would NOT even try a drop of it! All she wants is the gooey sweet & sour candy gel we put on her Nuk brush. She was a sport & after some kicking & screaming did actually take a few spoonfuls of peaches. You should see her in therapy though--she really thinks she runs the show. She tries to do her own thing & is very aloof...it flies ok in speech & PT where they work around what she chooses to do. But, in OT where that's one of the things we work on, woah, she has fits!!

Please visit Emma's buddy, Joseph. He had 3 surgeries today & has lots of appts & tests coming up in the next few weeks. Thank you!

I have his name mentioned above, but please say some extra prayers for Eric Latten, his surgery will be tomorrow (for more info, please see previous journal entries). Thank you.

Hope everyone has a good week. Some of you may know Jenna (a beautiful & brave little girl!), her family signs their emails "If you can't pay it back, pay it forward." I just love that & wanted to pass those thoughts on to everyone... Take care.

Friday, February 17, 2006 10:44 AM CST

It's been quite a news week...

Emma's MECP2 (Rett) & Angelman labs are back & they were normal. We've spoken to the geneticist & he feels Houston is best for us at this time because they can serve us in areas of metabolic or mito issues, & further Rett evals. Some girls who do have Rett Syndrome will test negative, but still indeed have it. So, when we go for the mito/metabolic eval, our geneticist wants us to meet with the neuro there that is an expert on Rett Syndrome & get his take on things.

It sounds like Houston can really do a lot for us, and at the minimum rule out or in what we're looking for. We have heard from several parents about Atlanta & Dr. S, so that is in the back of our mind if it's determined we do need a mito expert. Thankfully, we can drive to Houston.

We'll talk with our pediatrician on Monday & hopefully get the ball rolling on this. I'm not sure what the wait is like for Houston, I'm hoping we can start this SOON.

Thank you everyone for all your kind words especially this week. It really has been a blessing & helped make all this news a little easier. Some have asked about mito & what that is...the answer is truthfully at this point I cannot put it into words because I am just learning this all now too. We have friends who are dealing with the mito dx, so we're not completely in the dark on it. But, it's a hard thing to put into layman's terms. I will work on that (most likely with help from friends!) & let you all know as soon as I better understand it. The most positive & important thing I learned (thanks Vicki!) is that every child with mito is different, so the outcomes are very individual. We are holding on to that & at this point just praying we have an answer soon.

Thank you!

Thursday, February 16, 2006 10:59 AM CST

****We're especially thinking of my Goddaughter, Megan today. She is having her tonsils removed this a.m. We love you Megan & hope you're feeling better in no time! Keep drinking, enjoy those pops & slushies!! We are praying for a speedy recovery!!****

Hello. Well, things are sinking in a bit more today...we received a lot of slightly unexpected info yesterday. Josh & I are just going to take it day by day. Our pediatrician is out until Monday, so we can just relax until then. She'll be able to tell us our next step, etc. I have to thank Vicki for her email, support, & information.

We did find out that both hospitals take our insurance, but we've also been told about Atlanta. So, now we have to figure out where is the best place for us now. My guess is that the initial tests will be done in Texas for sure. I think they have some idea of what they are looking for, since we have some abnormal labs. Prior to this, the docs were really drawing straws in the dark. Her liver enzymes & acylcarnitine profile were both abnormal, & that gives the docs some more info than we had before.

Again, I will keep everyone up-to-date on what's going on here. Josh & I both feel pretty surprised, a little scared, but also some relief...we feel like we are closer than ever on getting an answer. I'm trying to stay as positive as possible, and on that note, once we know what Emma has, we may really be able to make positive changes in her life. Either through diet, therapy, etc. There may not be tremendous changes in her care, but something as simple as taking something out of her diet could help so much. She is going to start on a supplement L-Carnitor as per the geneticist, we're hopeful that will help curb some of these illnesses & increase her strength.

She is quite fussy today...Miss Emma was up from before 2 a.m. until a little while ago when she fell asleep in her high chair during a tube feeding. She was just up & goofy last night. Her cold is getting better, the medicine & treatments are helping.

That's it for now. Madison helped me choose our St. Patrick's Day pictures. She loves this holiday! She's on the look-out for that sneaky leprechaun who visits this time each year, moving her shoes, switching out her music, playing all sorts of tricks!

Wednesday, February 15, 2006 4:02 PM CST

Shifting gears again...we heard from Emma's geneticist today & he is concerned based on her recent labs and feels she needs a thorough evaluation for fatty/organic acid and mitochondrial disease. We knew her acylcarnitine levels were off, & that the labs done inpatient showed several abnormalities. We are glad Dr. Wilson reviewed them, as this could be THE key to finding Emma's diagnosis.

Of course, this really changes our direction. We are still awaiting the Rett & Angelman labs, but apparently Dr. W is convinced enough to start the mito eval asap. So, we're contacting the hospitals where the most tests can be done. We can go to either Children's in Dallas or to Houston (where they have a really great genetics program & can do more testing). Josh & I need to discuss this all further, and get more info from the docs. The evaluation would include more invasive testing, biopsies, etc.

In the meantime, he has put Emma on a carnitine supplement. The hope is that it will act as a safeguard against energy depletion & illness. It would be great if it does make a difference.

So, that's the new news. Will update once we know more as far as testing & the next step. Madi is almost all better, Emma is still very congested & having a rough time with her cough, and I'm still feeling less than wonderful! Hoping we are all recovered by the weekend!!

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Please keep these friends in your thoughts:

Today is Eli's birthday (he would have turned 3), please keep his parents Ann & Chad in your prayers. I have a link above to Eli's Angels.

Please pray for Stephen, his wife Nancy, & their young children. Stephen is going to be put onto a kidney transplant list, currently his only kidney is in 5th (final) stage of failure. He is at home on dialysis & a central line. It has been a whirlwind, they only found out about all this in the past month or so, prior to that Stephen was in good health, he is a cop in fact and only in his early 30's. His wife Nancy & my sister were roomates in college & remain very close friends. Please pray that he will get his kidney SOON & that the transplant is successful. Please pray that he & his family will soon go back to their life as they once knew it & that they only come to feel more blessed & stronger than ever before after overcoming this enormous challenge put before them.

Please pray for Eric Latten. He faces major surgery soon for removal of tumors on his brain. The surgery will take many, many hours with over 20 specialists performing it. He most likely will lose hearing & vision from the side of his face where most tumors need to be removed. Surviving the surgery is in itself a gigantic hurdle & there will be months of recovery. He is not expected home until August & will face a lot of rehab & uncertainty. He is only 13 years old. My niece Megan is good friends with his little sister and my sister is friends with his mom. They tell me Eric is just like any other fun-loving boy playing ball in his yard. He's had a tumor removed in the past. On top of this, their insurance company is probably not going to pay for the surgery. Please pray hard that Eric will make it through surgery, overcome whatever challenges lie ahead, & that his family will only become closer & stronger through this immensely difficult time in their life.

Our hearts & our prayers go out to each of these families. We hope they know how many people keep them in their prayers each day & that they are loved by so many.

Monday, February 13, 2006 9:45 PM CST

Sorry no pix! Madi had a wonderful time at her party, thank you to everyone who came & was a special part of her day. She truly felt like a princess this weekend, & she deserved every minute of it. She's been so kind, caring, & understanding (way beyond her years!) this past year with Emma and has even dealt with her own icky health issues, we wanted her to know just how much we love her. She told us she felt very special, that was our only goal. I will post pix from her party & birthday later this week. Here's a recap of what's been going on other than party festivities & a few prayer requets:

So, my ear drum perforated yesterday & so on Madison's birthday (thank goodness her party was on Saturday!), I spent most of it in bed & then at the walk-in center. I got a steroid shot (in my butt, no less) & am on mega antibiotics (nice on the tummy...NOT!), & some other medicine (those of you know me know how much I despise taking medicine...I'm a baby about that! I'll take all the shots or pain, just don't make me swallow a pill!). It could take up to a month before this is all said & done. JOY!

So, today Madi had her 5 year well visit & after a rough night and weekend for Emma, we made her an appt too. Madi went first, since I figured that'd be nice & easy. She failed her hearing test, her right ear worse off than her left. That explains why lately she says "What???" all the time & can't hear me. I thought it was a case of "I'm 5 going on 15 ignoring you!" Now I feel pretty bad. She does have some fluid in both ears, so we are hoping that is why her hearing is so bad. Not antibiotics yet, unless she starts having ear pain, etc. She is getting very frustrated with her hearing--Carla, I can only imagine what you've gone through with Joseph. It is rough. We're hoping her ears resolve themselves & that within 6 weeks, she's back to her old hearing self. Other than that, she is doing great in growth & all other areas. PHEW!

On to Miss Emma...well, she has (ANOTHER!!!) double ear infection. Worse still, her LEFT ear looks terrible, the tube is GONE, & Dr. K warned us that her ear drum may perforate because things are so bad in there. PLEASE pray this does not happen...the pain I felt yesterday really was horrible & I can't imagine Emma going through that. So, antibiotics for Emma & waiting (impatiently now!) to hear from ENT as to when tubes & ABR test will be done...Dr. K also said she'll talk to ENT & consider taking adenoids out too.

SO, that's been our life in the past 48 hours. I really have to just laugh, because there's not much sense in crying is there??

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More important than any of this, here are some prayer requests...two for my sweet girls & two for friends of my sister who really are in deep need of healing & PRAYERS. Please pass their names along to anyone you know, I know it will make a difference. THANK YOU!!!!

Please pray that Madison's hearing loss is strictly from the fluid in her ears & that this is not a serious problem.

Please pray that Emma's ears get better & that her ear drum does not perforate. I just can't imagine her having to suffer through that.

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PLEASE PRAY HARD for Stephen, his wife Nancy, & their young children. Stephen is going to be put onto a kidney transplant list, currently his only kidney is in 5th (final) stage of failure. He is at home on dialysis & a central line. It has been a whirlwind, they only found out about all this in the past month or so, prior to that Stephen was in good health, he is a cop in fact and only in his early 30's. His wife Nancy & my sister were roomates in college & remain very close friends. Please pray that he will get his kidney SOON & that the transplant is successful. Please pray that he & his family will soon go back to their life as they once knew it & that they only come to feel more blessed & stronger than ever before after overcoming this enormous challenge put before them.

PLEASE PRAY HARD for a young boy name Eric Latten. He faces major surgery soon for removal of tumors on his brain. The surgery will take many, many hours with over 20 specialists performing it. He most likely will lose hearing & vision from the side of his face where most tumors need to be removed. Surviving the surgery is in itself a gigantic hurdle & there will be months of recovery. He is not expected home until August & will face a lot of rehab & uncertainty. He is only 13 years old. My niece Megan is good friends with his little sister and my sister is friends with his mom. They tell me Eric is just like any other fun-loving boy playing ball in his yard. He's had a tumor removed in the past. On top of this, their insurance company is probably not going to pay for the surgery. Please pray hard that Eric will make it through surgery, overcome whatever challenges lie ahead, & that his family will only become closer & stronger through this immensely difficult time in their life.

Our hearts & our prayers go out to each of these families. We hope they know how many people keep them in their prayers each day & that they are loved by so many.

THANK YOU!

Wednesday, February 8, 2006 10:52 PM CST

Pictures can say a thousand words...

The last pic is from yesterday (found a great quote to go with it!), although Emma spent plenty of time in that box today!! The girls & I had a GOOD day today!!

(P.S. There are updates from therapy & ENT appt in journal history. Had to share these sweet pictures!!)

Tuesday, February 7, 2006 4:28 PM CST

THANK YOU! THANK YOU! THANK YOU! Thank you to Emma's buddy, Joseph, for the girls' Valentines surprises!! It made their day!! And Madison is overjoyed at her Birthday card & gift (she can't wait to go shopping!!). That was so very kind of you, Elizabeth. (((HUGS)))

The girls playing with their Love Bugs!

Emma catching a little rest, snuggling her Love Bug.

Emma had OT & PT today and was quite a stinker. In OT, Emma had the attention span of a gnat!! She was into Play Doh then blocks then puzzles...and of course, not wanting to finish anything!! She escaped twice, apparently she prefers the speech room! We did more sensory stuff today, Emma LOVED swinging & spinning (it's a platform swing). We're beginning the brush protocol (more info: Wilbarger Protocol) once again, we stopped after her surgery, but we think it will help her sensory issues. She was fine with Deborah doing it, so that's good. Some kids fight it, but it's always seemed to calm Emma.

It's amazing to see Emma with all 3 of her therapists, she really has bonded with them all now. She'll very easily get into their lap or be held by them. It's nice seeing her feel comfortable with them. I'm trying to find a preschool program for Emma. Right now there is one in Dallas & I think one in Fort Worth, I need more info from them. I think it'd be wonderful for Emma to have a few hours each week to be away from me (help her gain some independence...let's just say clingy is an understatement these days!) & with other kids. There are some private special needs schools that are SO expensive, it's unbelievable. The one in Dallas is state-funded, & they offer scholarships. It sounds great, but the drive would be crazy. We're hoping Fort Worth offers an affordable program. Either way, Emma will probably be on a wait list for a few months.

Well, Emma will continue with bi-weekly PT for now. Sarah wants her endurance & strength to be better than it is now before we move to monthly. Emma is still falling a lot & tiring easily. She spent parts of therapy just laying down (even while Sarah blew bubbles!). Sarah & I talked about how seeing Emma on a day like today makes you concerned...but then it's like "Is this normal tired toddler behavior? Or should I be worried?" We can't really figure Emma's bad (floppy, tired, etc.) days out. But, Sarah was glad her geneticist is reviewing her labs to see about something mito going on. I think sometimes I get the most insight about a dx from Emma's therapists...they see kids everyday with such a scope of conditions, that I really value their input.

Ready for some laughs???? We got our box o' Neogold (as Josh calls it!!) aka Neocate Jr. In an attempt to get our money's worth, Emma apparently decided the box was more fun than any toy in the house. On her own, she climbed in & just had a BLAST with the packing peanuts. She was just in sensory heaven!!! Just look at that mischievous grin!!!

Monday, February 6, 2006 10:44 PM CST

Emmma had her ENT appt & speech therapy today. Her right tube is not properly in place, so it will (& possibly her left) will be replaced. While she is under sedation, they will do an ABR test (to monitor how her brain responds to sound). I hate that Emma needs another test, procedure, & sedation...but at least we're able to do 2 at one time this go round. She did okay on her hearing test today--she responded to most of the voice tests (except for the lowest one) but was unresponsive to all but the loud sound tests. I know Emma's reactions (or lack of) my mean nothing, but it's hard as a mom having your child on your lap, hearing sounds & her not responding. I literally had to bite my lip until the test was done, & then just exhale. These results are inconclusive, because it doesn't tell us what her brain is doing. We know her ears are functioning, so either her brain is misreading the sound, not picking up on certain soundwaves, OR it is sensory-related (overstimulated so she doesn't hear certain noises, or understimulated--some noises are just too low for her to cue in on). The ABR test will give the docs more info, and possibly some answers on her speech. We don't have a surgery date yet, because the ENT has to schedule with the audiologist. We should know tomorrow or the next day, & we think it will be within the month.

Speaking of speech...Emma wanted to go right for the gooey sour candy gel stuff we put on her therapy nuk brush (for her mouth). So, since she is not really eating at all lately, her ST decided we'd follow her lead & just deal with oral motor today. Well, just as Emma has been doing for the last few weeks at home, she didn't eat much. She'd have a bite here, a bite there. But, no real interest. The ST tried everything from Cheerios to Cheetos, baby food to Rice Krispies to pudding. We think a lot of it has to do with the Rotavirus & hospital stay...but it's still defeating seeing Emma have no desire to eat at all. She's gagging on most foods that she does try. Thankfully we have the feeding tube, so she gets all her nutrition, but still it's hard because we're not moving forward with this. Hopefully this next week she'll want to start eating again.

Emma has OT & PT tomorrow, and then that should be it for this week. We're all getting excited about Madi's big birthday this week. Hope everyone has a good week!!!

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On a side note, I have to say something about Troy Aikman. Well, let me start by saying Josh is a HUGE fan of his & the Cowboys. Something I've learned to live with (lol! born & raised a Giants fan!!). I've always thought Troy Aikman was a great sportsmen, he was never showy & he played a great game. He will be inducted into the Hall of Fame this summer. Well, I mentioned to Josh a while back that at Cook Children's in Fort Worth, Troy Aikman has a kid's room (play area, computers, etc.) and I thought that was very neat. Then when I was in Dallas at Children's, I saw on a wall that his foundation has donated a LOT of money (listed under the $500,000-mil category) to the hospital. I was just really impressed by his charity toward the local children's hospitals--that is really cool & (in my mind) surely makes him Hall of Fame worthy, both on AND off the field. I thought it was worth sharing.

Sunday, February 5, 2006 10:33 AM CST

Hello! Finally got some Valentine's things on the page...not all what I wanted it to be, but the computer was not being my friend!! LOL!

Emma has (yes...AGAIN) an ear & upper respiratory infection, plus an eye infection. We see the ENT tomorrow, hopefully he can give some insight as to why, even with tubes, she continues to have SO MANY infections. So, she's been pretty out of it these past few days. Josh & I both ended up with THE stomach bug. UGH! I had it Thursday & Friday, he had it yesterday. I told our doctor we're going to get a house on a deserted island!! Before long, you may see me wearing gloves, goggles, & a mask, spraying Lysol everywhere...LOL!!

Other than fighting off the germs, Emma is doing well. Not eating much orally at all. She still hasn't been able to really get back to her eating since the hospital. She'll eat some crackers, some fruit, and that's about it. She's gagging on most foods (even her infamous chicken nuggets!). Thankfully, she is back to 21 pounds--one pound to go & we're at pre-hospital weight. YEY!!

Emma is becoming quite a copycat...she likes to mimic whatever Big Sis is doing. The cutest is when Madi is cheerleading or giving a concert (if you know Madi, you know what a DIVA she is...LOL!), Emma comes up to her & tries her best to do what her sis is doing. It's adorable!!

Madison is healthy, thank goodness. This week was her last at her school. They do not offer a part-time program, so Josh & I (after discussing it with Madi & getting her approval!) decided to change schools. She was there from 8 until 4 each day. She'll be in a 2 or 3 day camp this sumer, & until then we'll have her home. We have a great drop-in play center that Madi LOVES for when Emma has therapy or doctor's appts. It will be nice to have Madi around more, and I know it will be great for Emma. I can't believe Madi will start Kindegarten this fall!!

Cute Madi story--This morning, Josh was pouring her some chocolate milk & apparently, was too zealous in his pouring. Madi looks at him & says "That's too much. You know better than that." We both laughed. She comes out with these so grown-up things, it's hilarious. OH--and we've been warned, once she's 5, we can't hug her. Also, she wants all BIG KID toys. I wasn't aware that FIVE was such a landmark year!! LOL!

We're getting geared up for Madi's birthday & party next weekend, and of course Valentine's Day. We'll take plenty of pictures!!

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Please keep my nephew Michael in your thoughts & prayers, as well as his Big Bro Joseph (who himself recently had tubes in again & adenoids out) & his parents. He broke his leg this week & will have to be in a cast for 6 weeks. Feel Better Michael!! We love you! (((HUGS)))

Wednesday, February 1, 2006 7:52 PM CST

Some good news...Madi is ALL BETTER! She was looking pretty bad on Monday. Took her to the ped & she had an ear infection, red throat, & of course, a stomach virus. They gave her an antibiotic shot & some phenergran...thank goodness that did the trick. She's back to her old self!!

Emma, unfortunately, seems to have caught the bug. BUT, thankfully it is sticking to her lower end. We can handle diarrhea--we just keep pushing fluids through the pump. It's when she vomits that it's hard to keep her hydrated, even with the feeding tube. So, think this will pass very quickly. She has a runny nose too & is sleepy...not sure if it's related, allergies, or what!!

Some updates...

Emma will see her ENT next week. At this appt we'll get more info on the hearing test (I believe it's the ABR one) & that will be scheduled. I called to make the endocrinologist appt today, but they were already gone for the day. Will call tomorrow & see when they can see her for an eval.

Still awaiting word from our ins company about purchasing Emma's pump & the transition to the new health care supply company. That all should be an adventure! We've had our current one now for about 6 months and we just now ALMOST have our order right. OH BOY!

Also still waiting on coverage for Emma's insurance. We're doubtful it will happen...but hey, ya never know!! She's back to mostly tube feeds again. She's eating lots of saltines mostly & some bites of jar food, banana, & chicken. She's slipped back a lot with her oral motor skills, and again her speech is stagnant & there isn't any consistency to it (she may say a word once, then we never hear it again). We really can't figure it out.

GREAT NEWS: She is now being moved from weekly PT to every other week!! And, I think after next week, we may be able to go to monthly sessions. YEY!!! OT is going well, she doesn't like it much, but she is gaining some more patience. She's having a lot of sensory issues lately, so we are going back to the brushing (they have these soft brushes that you rub her arms, legs, & back with to help her, it's really putting pressure on these areas, not "brushing"). It helped a lot early on, so we're hopeful it can help her now too.

Last bit of new info...our geneticist emailed us today after we told him she'd tested neg for CF & that the AS/RS labs had been done. We updated him on her past 2 months & her hospital stay. He is concerned about her metabolic acidosis & wants the hospital labs. Apparently based on that information, it could lead more toward Emma having a mitochondrial disorder. Something we haven't given much thought to since she was 7 or 8 months old. Not going to worry about that until he reviews things & let's us know what's going on. Will keep you posted.

Thank you again everyone for your thoughts, prayers, & guestbook entries. Madi LOVED hearing all your well-wishes for her. Will post some new pix again soon.

Take care! (((HUGS)))

Sunday, January 29, 2006 10:15 PM CST

I can't even believe I'm typing this--but Madi is sick with a tummy bug. UGH! Since last night, she's been throwing up & going to the bathroom. Her tummy has been quiet for a few hours now, so hopefully she can get a good night's sleep & be well in the a.m. She had fever too, so I'm sure it's a viral bug & we're praying Emma does not catch it. Josh & I kept the girls separate all day (quite a challenge!!), and have been cleaning like crazy!! This winter has been terrible on pretty much everyone I know, just amongst Emma's cousins, there's been flu, strep, stomach bugs, & of course Emma's RSV & Rotavirus. Hoping Spring comes quickly & these germies leave! Please say some extra prayers that Emma can stay clear of this bug, and for that matter any others for a looong while. THANK YOU!

Now for some fun stuff...sending some smiles your way!!

Some pictures of Emma from this week--isn't she looking older? Almost all-toddler!!!

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My friend Janice did Emma's hair--a feat that Mommy has given up on (too much screaming & squirming!). We were sure to take pictures quickly, although I'm proud to say Em left her pigtails in for quite some time (nearly 2 hours!).

Sometimes even pretty fairies get the blues... How cute is she dressed up in her sister's ballet skirt & fairy wings? She enjoyed having them on too! She was being an almost 2-year old here, whining & all!!!

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Our little fairy getting into mischief--or, as I'm sure she would report, "helping" with our recycling!!! LOL!

Thursday, January 26, 2006 9:01 PM CST

GOOD NEWS! CF test results are in...NO Cystic Fibrosis! We really weren't thinking Emma had CF, but she did have the GI issues combined with sweating & failure to thrive, so her ped felt (& we agreed) it was well worth ruling out. We are VERY happy the results came back in so soon too.

So...now onto the next results. We'll know anywhere from 2 to 8 weeks on the Rett & the Angelman labs. Keep ya posted!

We're rescheduling with the ENT (probably see him next week) & will set up appt with endocrinologist as well. We're holding off on the metabolic specialist--we'll see what the endo thinks & then what the RS & AS labs tell us.

HAVE A GOOD NIGHT!!!!!!!!!!!!!!!!

Wednesday, January 25, 2006 7:05 PM CST

Wow! Emma's tests are DONE!!!! I wasn't sure how I'd feel, but I am VERY relieved. We went to Children's this a.m. to have the CF Sweat Test, and blood drawn for Rett Syndrome & Angelman Syndrome. We should have the results for the sweat test by next week. It could take up to 8 weeks for the other labs.

As always (have to brag!) Emma was her TOUGH little self! She was not thrilled (who would be?!) & voiced her opinion, but she was so good. I was weary of bringing her after her hospital experience, but the docs want these tests done. I thought she'd fight a lot more, but she was so brave. The staff there was AWESOME. We've only gone to Children's for a video swallow, otherwise her other docs are at another hospital. Anyway, the woman who did the tests was so sweet--they gave her stickers before the tests (Emma was VERY happy!), showed her a singing bird to distract her, turned on cartoons for her...AND most important, they spoke TO her. Told her ahead of time all that they were doing & were so reassuring. I really think that's what made all the difference, & why Emma did so well.

Children's hospitals are just so different, they speak TO the child...not over them. Emma looks so small & the fact that she can't really speak, people assume she's younger & doesn't understand. But anyone who is around her for a few minutes will realize she gets it all. So, it was nice to be in an environment where they talked to her & treated her like a typical toddler (stickers & cartoons!!). We're going to speak to Emma's pediatrician about a plan for hospitalization. We hope she won't have to be admitted again...but we need to be prepared. The local hospital we were in is not prepared for feeding tubes, Neocate, etc. We'd prefer Medical City where her surgery was & because most of her specialists are there. But, if my doctor has rights at Children's, after today I would be 100% fine if that's the appointed hospital for little Em. She really loved the trains in the lobby (floor to HIGH ceiling of train tracks & trains, very cool!).

Well, we are so glad those tests are done & over with. I'm actually a lot less anxious now than I was before this a.m. If it takes the full 8 weeks, I may get a little stressed...but for now, I'm just glad this giant step forward has been taken. Whatever the results, we are further down the road now than we were before today. That is a good feeling.

Thanks everyone for your prayers, support, & entries. CaringBridge has changed the guestbooks, I think they only posts that day's entries...you can go into the archive entries to see past ones. This will help the loading time, it won't take forever! TAKE CARE!

Sunday, January 22, 2006 9:03 PM CST

The start of another week...where does the time go???

We had a low-key weekend because neither of the girls were feeling great. Texas FINALLY got some much-needed rain, thank goodness! Emma is slowly getting better, but still not herself, still congested with cough. We return to her pediatrician tomorrow for a follow-up, and to discuss her blood sugars. I'll also reschedule her sweat test & bloodwork (for next week) & ENT appt. Busy, busy girl!!

Madison is coughing tons & was real out of it today. She coughed so much this evening, she threw up. Yes, it is a 3 ring circus here!!! YIKES!

I'm happy that Emma is back to therapy this week. She has speech tomorrow, then OT & PT on Tuesday. She's starting to become frustrated more & more because of her lack of speech. Although she knows a lot of signs, she obviously doesn't have enough to always express her needs. We try to teach her as many as we can. We also thought by now her speech would have improved, but there hasn't been much progress...while she does have some words still, many of the words she has said at one time we never hear. She still says "Dada," "Mah" (for Madi), "Guh" (for go), & every once in a while a few others. I'm anxious to see if her speech therapists can offer some insight into this, and what more we can do to help. We'll defenitely be doing the ABR test, that is what the ENT will be scheduling. It's important to know how her brain interprets sounds. The ABR is a hearing test, in which she'll be sedated & then they'll monitor her brain waves while different sounds are introduced. At least that's how I think they explained it to me!!

OT will be great too...she's having lots of sensory issues lately, I think from just not feeling herself. PT will be good too to help gain back some of that strength again.

Thanks again for all the prayers & well-wishes. We cherish them & love reading your guestbook entries.

HI NANNY!! My Mom is online (woo hoo!) now. My parents got internet access, so that is a very cool thing. My Dad would visit the library & check email and Emma's site...but my Mom missed out on the updates & pix. So, HI MOM! We're excited you can keep up with Emma & email us too!

Monday, January 16, 2006 8:14 PM CST

Thank you everyone for your thoughts & prayers!!

After a very difficult weekend (& week!), Emma is now slowly getting better. We had to see her pediatrician today because she developed a new cough, plus her wheezing had gotten worse. Her RSV turned into bronchiolitis, but hopefully the worst of it is behind us. We're adding bronchiosaline to her nebulizer treatments & CPT's after each treament, this should help break up the thick mucus & help her breathing.

Emma's doctor thinks she had RSV prior to being in the hospital, it usually presents as runny nose & upper respiratory infection before moving lower into the lungs. So, her body was bombarded with both icky bugs (rotavirus & RSV) at the same time. Considering that, I'd say she's doing amazing.

She is sleeping most of the time still, but her bursts of play & energy are getting longer each day. It's nice being all snuggle-bunnied with her though. I'm not sure if she'll ever sleep in her crib again, she may be hooked on this whole in mommy or daddy's arms in recliner thing!!

Emma can go back to therapy next week...I have a feeling we'll see some set-back in speech (major oral defensiveness now) & have some extra sensory work to do. I'm anxious to get back...with the holidays & Emma's being sick, it's been a while. We'll probably set up the CF sweat test, & RS/AS labs for 2 weeks from now, give her veins time to heal.

We're starting to plan Madi's birthday party. I can't believe she is going to be 5!!! And before too very long, Emma will be 2. WOW!!!

Well, my 'break' is just about over. Almost time for Emma's last round of medicine & treatment. Thank goodness that recliner is so very comfy!!! And, Josh had extended cable installed yesterday in our bedroom...so we are good to go!!! Just need a mini-fridge & microwave and we can officially just live in our bedroom. LOL!! Thanks again for all the prayers...keep 'em coming! Our Little Tough is is doing so well because of them. (((HUGS)))

Saturday, January 14, 2006 8:14 PM CST

Hello...Just an update & note to ask for some more prayers for Emma again. Today was the worst day for her cough, she was held by Josh or I throughout the day, not wanting to get down & play. A few times, she was choking 3-4 times per minute. The doctor called in oral (gtube) steroids. We're hoping that those combined with all her treatments & OTC meds today, that she'll have a better day tomorrow.

Some GOOD news...she is tolerating 40cc/hr of 1/2 strength Neocate Jr. now!! That is really good, tomorrow we'll bump it up to 45 (1 1/2 oz) per hour, continuous feeds (24 hrs/day). That is the minimum to keep her properly hydrated, so we're thrilled she is doing so well--some mild wretching but no vomiting.

Please say a few extra prayers that today was the worst & that the next few days will bring FULL healing for our Emma. We just want back to her old self, seeing her playing & toddling around the house.

Please also pray for Emma's great-grandmother, MaMa, who had to go to the hospital today. Thank you.

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Oh--I must thank JOSH for his entry (as you can see, we both love to talk! LOL!). It was actually really sweet, I thought...and yes, his sense of humor is what keeps us afloat on the bad days!!! THANK YOU BABE!! I also need to thank him for being with us all week, staying at the hospital, arranging plans for Madi, & making sure Emma got all the supplies she needed. You are our rock!!!

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Thank you again for all your support, thoughts, & prayers for Emma. We know that so many people, those we know & those we don't, pray for Emma, and we see the difference it makes. Knowing how many wonderful folks care about our family, it helps us so much.

THANK YOU!!

(((HUGS)))

Friday, January 13, 2006 2:15 PM CST

UGH--Just posted a bunch & it all disappeared on me... OH WELL!

THE IMPORTANT NEWS: We are home SWEET home! Emma was discharged around luchtime today & it is SO very nice to be in our comfy, quiet home again!

She is doing okay. We think the rotavirus is GONE (yey!), her poop today was fairly normal...no more diarrhea!! Yes, we did get excited over that...lol! We'll have to continue going very slow on her feeds--she is getting about 1 oz an hour, continuously with her formula at 1/2 strength. We'll very slowly bump up the strength & amount she gets. Then we'll add "BRAT" foods orally, and finally she'll be back to her usual diet. And, then, it will be BRING ON THE CALORIES to gain back all this lost weight. I'm afraid to find out what she weighs now...but I do know she's a champ & will come back swinging again.

The RSV may be around for another week or so. She'll need breathing treatments round the clock, and OTC meds to help the cough. She's wheezing more today & the cough is just nasty. She just looks at you with these sad eyes, I know she's asking "why is this happening?"

She once again, came through all this amazingly well. She was poked so many times, it was agonizing to see her go through all that. Most of her veins are shot, so it will probably be a few weeks before she can have the next round of genetic tests. Not really top priority right now anyway--we just want her to get well.

Madison wished 3 times last night as she threw coins into the hospital's fountain that Emma would get better & come home. She was going to pray hard & wish a lot for that to happen--it worked! Josh & I are blessed with two amazing little girls.

Thank you everyone for your thoughts & prayers for our Emma. Thank you to our family for your visits, phone calls, meals, support, & especially for taking such great care of our Madi, giving her that extra TLC she needed this week.

Have a nice weekend. I know we will!!

Wednesday, January 11, 2006 10:45 PM CST

Well, this is Daddy's first entry into the journal, although an avid reader, not an avid writer.

Since our last post a lot has happened. Namely more hospital time. Monday night Lauren and Tiny e went to the emergency room and were admitted. After a few snafu's at the hospital we finally got on the right track, but Tiny e got RSV.

We were trying to stay out of the hospital all together because of the risk of her catching something while we were treating her symptoms of the Roto Virus. The first night they tried to give her an IV, but to no avail. . . 6 pokes and several tears later(by everybody in the room) we gave up. We were afraid that the RV had left her so dehydradted that her veins would not take an IV. So we started pedialyte through her G-tube. After the 1st night her sugars were down to 44. The plan was to give her some sugarwater, but of course, you need an IV for that.

Fortunately for me, unfortunately for my wife, I missed the next 6 try attempt at getting the IV to stick. But they finally got a good vein, and were able to administer the sugars to get her back on track.

(Side note: it is really hard on a parent to hold down their sweet baby so that they can be poked and prodded. The several IV attempts really were, "this hurts me more than it hurts you" type of moments. That was the hardest thing we've had to do in a long time. But, the ends outweigh the means, and as a loving parent, you have to push through the hard times knowing that the greater good will be serverd. It helps to process the moment to think of it in those terms, but it does not help you through the moment using those terms; nothing helps you through those moments. I believe, even though she can't talk, she understands. Because at the end of the six attempt IV ordeal, she hugged her mommy, waved good bye to the nurses, and put her head on her mommy's chest. She has an amazing way to communicate her understanding of a situation with so few tools to do so)

Unfortunately, the hospital we are at does not have Neoplatinum (raised from Neogold: Target stopped carrying it), nor do they have an extra Mic-Key button, extention set, etc, etc. So, to make a long story short I had to drive the 30+ mins home to get the Neocate, and bags to start her on her way to recovery.

The next enlightening experience is trying to mix your own Neocate at 3:30 in the morning with a 240ml cup, a 10 ml medicine cup, and an 8 ounce bottle that is only accurate if you hold it upside down. Try doing the conversions in your head from ml to cups and tablespoons. Luckily, I had my trusty web-enabled pda and found the conversions. Unluckily, I didn't realize that the bottle was only accurate if held upside down. (Did anybody notice, that it is the patients Dad mixing her food, and not somebody in the hospital's pharmacy?) Very sanitary conditions, I could choose next to the sync where you put the soiled diapers, or next to the microwave and coffee maker. I tried both; screwed up both times. Did I fail to mention that I messed up the measurements too? I'm blaming the lack of sleep on that one.

The vomiting had subsided, but she was still really weak.
Then the cough started, and it has yet to end. She tested positively for the RSV, and so, is now getting breathing treatments every 4 hours, Tylenol for her fever, and plenty of hugs and kisses for comfort. She is truely loved.

We do not know when we will be getting home from this trip to the hospital, and we may even make a trip to another hospital so we can get the care we need, but alas, we will go to the ends of the earth, because it is for my Tiny e.

Thank you to Honey and Pops for taking such good care of Madicakes for us. (she was spoiled: icecream before dinner; all the joys and blessings that grandparents bestow on those grander than their own offspring)

I am at home with Madi so she can have some sense of normal. (A sense of normal is for another journal, I could filibuster for days on that one) She is a very understanding, compassionate, and loving little girl. What a great big sister she is to her 'little tough'. She shares her mommy and daddy with great understanding, that her little sister is sick and needs them right now.

Thank you for your prayers, and meditations. We appreciate them all. Goodnight and MAKE tomorrow a great day!

-Emma's Dad

Tuesday, January 10, 2006 9:26 PM CST

We need some more extra prayers... Emma was admitted to the hospital last night. Her doctor had us come in yesterday evening to have some bloodwork done b/c of her lethargy. The results came back just before 9 pm & her glucose levels were too low & she was acidonic. The hospital was busy & by the time they tried to draw some blood, she was pretty dehydrated. They were barely able to get any out & then they tried to start an IV...it was a nightmare. They poked her 5 times, at least. Each time her vein would blow, so they decided to rehydrate her with Pedialyte through her mic-key & this a.m. after another 5 very difficult tries, they were able to get an IV started. It was very heartbreaking to see her going through all that, on top of her not feeling good. I am so thankful Josh has been able to stay here with us.

She does have rotavirus, they were able to test her stool today. Thankfully, the worst of that is over & it's a matter of getting her back on her normal feeding schedule. Her glucose levels were down to 44 this a.m. & that was a big concern. The IV fluids has helped, her last number was 101. She is tolerating 30 cc an hour of 1/2 strength Neocate Jr. Tomorrow a.m. we will up her tube feeding amount & if all goes well, we go home!!

I'll keep everyone posted on our Tough Emma! Please pray she is feeling better SOON & that we can all go home tomorrow. Thank you Honey & Pops for watching over Madi and for Aunt Denise & Uncle Julio for your visits & food!! We've (obviously) cancelled tomorrow's sweat test & blood tests. Not sure when we'll reschedule them for, I guess in a few weeks. Thank you for all the extra prayers for Emma. (((HUGS)))

Monday, January 9, 2006 3:48 PM CST

Hello, well I sort of changed Emma's page. She's been resting on me while I put some cute Pooh stuff up.

Em is not doing much better. She hasn't thrown up since Saturday evening, but she's had fever on & off (as high as 103.9) and diarrhea. My biggest concern is how lethargic she is, she had some more energy earlier today, but has slept since noon. I've tried everything to keep her awake, playing, putting her in the highchair, nothing worked so I've just been holding her. She is getting 1/2 strength formula through the tube, about 2 oz per hour. This is keeping her hydrated.

I just called the doctor because of her sleepiness & she hasn't gone to the bathroom since this a.m. I was supposed to bring by a sample for them, what she had in the office was so liquidy, they couldn't get any to test it. They think she has rotavirus. Worst news--she is down to 19 lbs, 10 oz. I almost cried...had to fight back the tears. It took so long to get over 20 pounds, she's been doing so wonderful. And, in a week, we've lost so much ground. Emma's ped was so kind & reassuring. She said it will much easier & quicker this time around to regain the weight than after Em's surgery.

Please keep Emma in your prayers, mainly that she gets to feeling better & doesn't lose any more weight. She may have diarrhea for up to 5 more days. Today is my birthday, but I think we'll reschedule it until next week!! Thanks everyone for your prayers. Take care.

Sunday, January 8, 2006 7:59 PM CST

I only have a minute to write...
Please say some extra prayers for Emma. She has a bad stomach bug, she was vomiting & had diarrhea most of yesterday. Thank goodness for the feeding tube, we were able to give her Pedialyte continuously (like an IV). She still has fever & diarrhea has returned. We'll go to doc tomorrow. THANK YOU.

Wednesday, January 4, 2006 8:20 PM CST

Hi everyone. Well, the holidays are over & we had a wonderful time, despite the many colds that were bouncing around the house!! I think Emma misses the lights, we took all the decorations down this weekend. She is enjoying her new toys, as is Big Sis Madi. Madi is now onto her birthday!! A month away & she can't wait to be FIVE!!

Emma is doing okay. She has not slept well for over a week now, leaving me very sleep deprived!! She goes down for an hour or two, then is up for a few hours (usually between 11pm & 3 am or so)...she's just awake, sometimes laughing & being silly, other times just wanting to be held. We're camping out on the recliner together, thank goodness it's a comfy chair!!! Emma's always had sleep issues, but this may be the worst it's been.

She saw her pediatrician today & had more granulation tissue removed. We're bummed, Emma has lost weight again. Her ped figures it's from her illnesses & not a huge concern. She's down to 20 lbs 14 oz with clothes on. So, we're to up her tube feeds & not really count what she consumes orally (calorie-wise). She won't be very thrilled, now that she is mobile long tube feeds are challenging. We're hoping to get a smaller pump that we can get a mini backpack for, & she could get feeds while playing.

Because of her failure to thrive & GI issues, her ped wants to rule out Cystic Fibrosis. This is something that's been brought up before, but other things always have come up. So, now that things are calmer, Emma will have the sweat test done to rule out CF. We'll do this at the Children's Hospital & on that same day, Emma will (FINALLY!) have blood drawn for Rett & Angelman Syndromes. We should hear back tomorrow on a date. Emma is going on Miralax (what Madi has taken for constipation & it helped) for her constipation. She's been very gassy & constipated lately, something we haven't had to deal with in a while. This could even explain her sleep issues.

The pediatrician also wants Emma to see a Metabolic Specialist & also an endocrinologist...here we go filling up our date book again!!! At least we all feel like we're making forward progress on finding some answers for our Em.

Her Acyl Carnitine Profile came back & the results were slightly off--they were elevated. We went over so much at the doctor's office, that I forgot to ask more about this. The most important thing is that Emma's neurologist doesn't feel it's a big deal right now. Her numbers were only slightly elevated, and that could do with her tube feeds (ped said her formula may supply her w/ higher amts of nutrients). The small elevation would not explain any of Emma's problems they said. I do want to ask some more questions about the test & also get the results in my hands. I expected the test to be normal, or for her to have a slight carnitine deficiency (that can cause hypotonia, I've heard). So, between not thinking it'd be elevated & my lack of sleep, we didn't go into it more.

So...that's where we are for now. Emma's cute as ever, using her best sign manners--thank you & please! I'm so very proud of her!! She's also becoming quite a dancer!!! Our visit with my mom is going so nice, the girls just LOVE having their Nanny around! Having my mom around has been a big help & great company too! I told her tonight how nice it is having my dishes cleaned!! Emma goes through more syringes in a day, it's great walking into the kitchen & everything is clean! THANKS MOM!!!

Hope everyone is having a good week. Please keep a CB friend of ours, Joseph, in your thoughts & prayers. He has pneumonia, thrush, & pink eye right now. His mom has been so sweet to us, and I know they'd appreciate your well-wishes for him. THANK YOU!

***As you can see, I still haven't changed the site, so no password yet! I'm going to try & change Emma's site in a few days, and by then Josh & I will decide for sure about the password. All of our CB friends, our friends & family, & the other caring folks who have been in touch with us will all get an email with the password, if that is what we decide to do.

Wednesday, December 28, 2005 7:56 PM CST

Hi there!

Well, I had intended to write a Christmas message here...but time slipped away! I hope everyone is enjoying their holidays!!

The girls both enjoyed their Christmas! Emma didn't quite get the unwrapping of presents, but she sure enjoyed having new toys "appear"!!! LOL! Madison was so very excited, it's wonderful to see Christmas through their eyes. The greatest gift, it seems, is the wagon Santa brought them. They BOTH LOVE IT!! As you'll see in the pictures, they even ate their Christmas breakfast in it!!

Hope you like the pictures, I'll post more pix later this week or next. Emma is sick still...now another ear infection (only her left ear), sinusitis, & still upper respiratory infection. So, she's now on antibiotic ear drops, antibiotic, & breathing treatments. This better kick all the germs out!!!! She is very sad today & yesterday, just wanting to be held & sleep. She hates the breathing treatments & ear drops, so she won't be too happy with us for the next week or so. She's having a lot of wretching & even vomiting because of all the excess mucus, and diarrhea too. So, she's been mainly on Pedialyte for 2 days now, we're hoping she'll tolerate her Neocate Jr. okay tomorrow. The ped also told us today that her right tube is coming out, it is misaligned right now, so it will probably fall out soon. We're set to see the ENT in 2 weeks (to schedule add'l hearing tests), so we'll see what he thinks.

Everyone is excited because Nanny (my mom) comes tomorrow. That will be a fun visit, Madison is thrilled & I know my mom cannot wait to see Emma walking. I'm looking forward to spending time with my mom.

Lots to do this week...STILL trying to figure out this whole Rett test fiasco...also needing to straighten out our home health care supplier situation, PLUS attempts at getting Neocate Jr., the Zevex pump (to own), & Simply Thick covered by insurance company...wish us luck!!!

A BIG thanks to Denise for taking Madi & I to dinner and then the Cheetah Girls concert (and Aly & AJ)...Madison had a BLAST, and I can finally hear again (100's of screaming & screeching 6-12 year old girls!!! WOAH!). THANK YOU! It was nice for Madi & I to have a night out, and we enjoyed hanging out with you & the kiddos.

Here's some pix...

Madison & her cousins at the show

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Our own little DIVA!!

Emma opening up Blue (she LOVES her!)

Eating Christmas breakfast in their NEW wagon...

Emma enjoying a pancake!!

ALSO--sometime in the next 2 weeks, I'm going to put that passcode up on the site. To everyone who has emailed me & to our family, I will forward out the login info to you as soon as I change the site. I will try & copy everyone who signs the guestbook on that email, but to be sure, if you want the passcode, please email me. THANK YOU!

Thursday, December 22, 2005 2:46 PM CST

Hello...

A few quick updates, but before I forget--on my previous post I added a bunch of info on sensory integration, to help explain it.

Anyway, well Big Sis Madi saw the GI doctor today & he's pleased with how things are going. Her constipation is much better!! So, she doesn't need to go back until June!! YEY! She is GROWING lots--she's almost 3 1/2 feet tall! She still is coughing a bit & her ears were hurting her today...hopefully it's just things clearing up.

As for Emma...she has an Upper Respiratory Infection (new one) again. Her fever went up to 102 last night (way high for her) and the cough is getting worse. Not sure if it's turning into croup or what, we go back to the doctor tomorrow to see how her breathing is. She's feeling pretty miserable.

Oh, and Josh has pink eye! So, it's just a little infirmary here! GERMS BE GONE!! We're just hoping everything GOES AWAY before the weekend so it does not interfere with our Christmas!!!

Well...it's crunch time for shopping! I've got ALL my wrapping left to do & a few last-minute things to pick up. Madi & I are going to bake cookies later. FUN!!! Thanks again everyone for coming by!

***Just another note: I may be putting a password/lock on Emma's site. Anyone who would want the passcode could just email me (I'd send out an email to family & friends, people I know who visit Emma with good intentions). The reason for this is because a friend sent me an email about people who are setting up pages on Caring Bridge & other similar sites--they lie about themselves or their children being sick or having health issues, JUST FOR ATTENTION! Apparently these individuals surf the web on pages like these & get stories or whatever & basically put what's really happening to a child on their false site. Very sick & twisted, and I'm gonig to think about that passcode because it would safeguard Emma's info from becoming 'storylines' for these people. I really just can't imagine why someone would do that...I've heard of that problem on some message boards, and I guess now it's happening elsewhere. Very sad.

Tuesday, December 20, 2005 7:52 PM CST

Hello everyone. I changed Emma's site a bit again. Anyway, both girls are sick (yeck!). Madi still has cough & fever (has been on Omnicef for 5 days) and tonight Emma had 101 temp (that is high for Miss Em, with her 95-97 temps). So, I'll take both girls in tomorrow to be checked. Will keep ya posted...

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Well, so much for changing medical supply companies! Our insurance company will be switching coordinators, so come February, we'll have a new company that will be the supplier & coordinator. Better as far as streamlining, not so good in that if we're not happy with them, we're stuck with them. We've already found out that they WILL NOT offer the Zevex pump we now use. As time goes on, we're seeing that Emma will have her mic-key for a while longer than we had originally hoped. So, we really think she'll need something light & portable (the Zevex) now that she's a full-fledged toddler. We'll see...we're hoping something works out. ALSO, we found out that no matter what, in all likelihood Emma's Neocate Jr. will NOT be covered. Cigna is still refusing to do so...our pediatrician will write another appeal. So, we're stuck with our current supply company until February, and then we'll see how the new one is. Thinking positive & praying LOTS!!

Some glimmer of hope in attempting to have the MECP2 (Rett) test done... The pediatrician's office called yesterday & said all we need is a written rx for the labs, & Cigna says they'll cover it. They faxed that over to Emma's neurologist yesterday, so hopefully we'll hear from them today & we can schedule the test. It would be nice if the next step is just getting the labs done...no phone calls, letters, etc.!!!

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And now for some REALLY GOOD NEWS!!!

Emma's been doing really well lately (despite the icky germies!). She's walking all around, looking cute as can be! She is making more attempts at speaking, trying to mimic sounds & really wanting to communicate. Emma now SAYS her own version of: "Baby," "Ball," "Go," "Dada," & "Mama!!!!" She's working hard on mastering "Pookie" (her little best stuffed Koala bear), "Cookie" (she is our little cookie monster!!), "juice," and others!! All of this is in addition to her animal sounds. Her speech therapist is working on different sounds & pronunciation with Emma. She is very happy with the new attempts Emma is making, the next step is getting Emma to a point where she says the words she knows on a regular basis. Emma's receptive communication is improving as well.

We're still doing the sign language, this is something that will continue. The signs are basically a bridge to Emma's verbal speech & they help her receptive skills as well (makes it easier on Emma when she visually SEES the sign AND hears the words). She still gets very frustrated (screaming) at times when she does not have the words or signs to express what she wants. As she learns new signs, she is becoming more social & less frustrated. For some signs, she's just like any other toddler with her own language--she has her own versions of some signs. In fact, she made up her own for "open," she tucks her arms in & lifts up her elbows (almost like being a chicken). It's pretty funny when she is moving her arms or hands, looking at you like she just cannot believe you don't understand her. I remember going through this with Madison, she'd think she was saying a real word just fine & mommy was nuts for not understanding her!!

We're so very proud of Emma for all the hard work she puts in each & every day, and especially at therapy. She pretty much knows the drill now (although she still attempts to run the show at therapy!!! LOL!), & cooperates most of the time. There are still plenty of times that Miss Emma gives her therapists a hard time, these women are so very patient!!

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A few people have asked me about Sensory Integration. Here's some info:

Sensory Processing Disorder (SPD) is a complex disorder of the brain that affects developing children and adults. People with SPD misinterpret everyday sensory information, such as touch, sound, and movement. They may feel bombarded by information, they may seek out intense sensory experiences, or they may have other symptoms.

"Sensory processing" refers to our ability to take in information through our senses (touch, movement, smell, taste, vision, and hearing), organize and interpret that information, and make a meaningful response. For most people, this process is automatic. When we hear someone talking to us or a bird chirping, our brains interpret that as speech or an animal sound, and we respond to that information appropriately.

For example, most people can block out background noise like a fan, but Emma may hear every sound in the room (the fan, the fridge humming, the oven, the dog outside, etc.), which can make it very difficult to focus & understand when we talk to her. You may even at times see Emma covering her ears, even when (to us) there is no loud noise. This is also why it can be very hard on Emma being in a new setting (visiting another house, being at a restaurant, etc.), there is SO much for her to take in & process. So, she may seem to be 'clinging' to Josh or I or being antisocial, when she is just needing some comfort & security while she sorts through all the sights, sounds, & smells of a new or different place.

What is Sensory Integration?
The senses work together. Each sense works with the others to form a composite picture of who we are physically, where we are, and what is going on all around us. Sensory integration is the critical function of our brains that is responsible for producing this composite picture. It's the organization of sensory information for on-going use.

*sense of touch, hearing, sight, smell, & taste
*sense of movement (vestibular)
*sense of body position in space (proprioceptive)
*organization of the senses
*motor planning (praxis- planning and executing an action)

Signs of SPD (only a few here):
*overly sensitive to or underreactive to touch, movement, sights, or sounds
*easily distracted, short attention span
*activity level that is unusually high or unusually low
*impulsive, lacking in self control
*difficulty in making transitions from one situation to another
*inability to unwind or calm self

What is Sensory Defensiveness?
Sensory defensiveness is simply the over activation of our protective senses. It is a misinterpretation that, for example, will make our clothing feel like spiders on our skin or climbing stairs may seem like a cliff, or a tendency to react negatively or with alarm to sensory input that is generally considered harmless or non-irritating.

For example, certain clothes will irritate Emma to where she will tug & tug on the sleeves & not be able to do other activities. For a time, she absolutely could not wear footed PJ's. We now have 2 or 3 brands of cotton clothing that she wears comfortably, and we stick to that. Tasks like washing Emma's hair, trimming her nails, or brushing her teeth seem like torture to her. Certain foods or textures can cause her to gag severely.

I hope that has helped explain some things & that it's not too confusing!! For Josh & I, we are just learning things as they come. The doctors & therapists explain things to us & we sometimes forget that everyone else may not understand what Emma is dealing with. One of the many benefits of the CB page is that we can inform & explain here. It's much easier since we have the page, emails & phone calls to family & friends can just be about life...not just updates on the medical stuff we're dealing with.

The challenges Emma faces now & the medical issues she has, are things that we will have to deal with for at least some time to come. Obviously a diagnosis will give us some idea of what things may look like down the road. But, for now, we take it one day at a time, & have acknowledged that this is how things may always be for Emma. But the most important thing we have learned throughout this journey is that Emma is Emma. A cute, funny, & sweet little girl who is so full of life. She isn't now, nor will ever be defined by her differences or a diagnosis. One thing I can't stress enough is how much Emma understands...just because she doesn't speak or move like other kiddos her age does not mean she shouldn't be treated like her toddler peers.

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Well, almost all of our shopping is now done. The tree, stockings, & decorations are all up. We've been baking & listening to Christmas music. Only a few more days until Christmas & we're all very excited. What a year it has been.

Last year this time, we were so scared & confused about what was going on with Emma. All we knew was that the docs were very concered about our little baby...she was delayed, lacked any proper reflexes, & was having what was thought to be seizure activity. We were only starting out then, on this journey...referrals to a neurologist, blood tests, an MRI, and therapy. It was SO much to take in & something you can never prepare yourself for. Even though we're still searching for a lot of answers, we know so much more now than we did a year ago.

Last Christmas is a bit of a blur for us...I feel bad that the joy of Emma's first Christmas was blurred by the confusion & fear of what was going on. BUT, we are surely making up for it THIS year by enjoying every moment & making precious memories. Emma has been through so much this past year, and has come through it all still smiling & shining. She is amazing!!

Anyway, it's been quite a year & we're just celebrating all of our many blessings. Hope everyone is able to take some time to sit back & enjoy the holidays.

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Sunday, December 18, 2005 2:55 PM CST

I want to thank everyone who visited Eli's page & Eli's Angels. Your continued prayers for them through this difficult time is greatly appreciated.

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Some updates on Emma...

No MECP2 test (Rett Test) as of yet. The doctors (geneticist, neuro, & ped) are still figuring out who should do it, how to handle insurance, etc. If insurance does not cover it, we'll need to pay about $1000.00 for it. SO, they are wanting to make sure they've made all attempts at getting it paid for us. We're happy about that, but frustrated it is (still) taking soooo long to get this test done. We just pray at this point the labs are drawn in the next 2 weeks, before 2006! Emma did have the acylcarnitine profile done this week. So, at least it's one down...2 to go!

In an effort to stay positive (lol!), I haven't complained much lately about our medical supply company...but, they've continued to dissapoint us. They send the wrong items, send things late, and just lack the customer service you expect from a medical supply company. My pediatrician's office gave me the name & number of a new company who accepts our insurance & I called them this week. They were great!!! The woman I spoke with knew all about pumps (& they carry the Zevex we use!), types of tape, etc. AND (big cheers!!!) she is pretty sure they can get us Emma's Neocate Jr.!!!!! WOW!

Please pray that they can supply us with at least some of Emma's Neocate Jr. Right now, the formula costs $600-800 per month, depending on Emma's consumption. I received an email from the SHS, the company who makes it &they are raising the price of it in January. One case will now be $14 more, so we'll be paying more than $100 extra each month. Obviously, we have no choice in the matter. It is the only formula she can have at this point, and it's been amazing for her GI problems. What makes us angry is that she physically cannot take regular formula or Pediasure, her tummy cannot handle the milk or soy proteins. We are trialing milk & soy now, in VERY small increments. So far, so good. But, the doctors do not want her going 'cold turkey' onto all dairy or soy. We need to make a very gradual & careful return to it, and make sure Emma is not reacting to it. With Emma's milk soy protein intolerance (MSPI), she will get gas & bloating, followed by painful cramping, bloody diarrhea, & more yucky symptoms. Her doctors have written many letters stating medical necessity for Neocate & for all but one month (out of 15!) they have denied coverage. They 'recomend discussing alternatives with your doctor.' Frustrating!! But, we are hopeful that we can get at least some Neocate Jr. from the supply company & that (very hopefully!) Emma will be able to tolerate more milk products as time goes on. The new service should begin sometime in January, we're excited because I think they'll be much better to deal with.

Madison is sick, with fever, congestion, & cough. They are treating her for allergies & a sinus infection, and hoping it's not the start of the flu. YUCK! She did have a flu shot, so the pediatrician said at least if it is the flu, it won't be too bad. She's resting a bunch, but still feeling pretty miserable. Now, Emma is starting get congested again, with lots of boogers. Poor babies!! We're hoping to KICK all the germies out before next weekend!

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Well, almost all of our shopping is now done. The tree, stockings, & decorations are all up. We've been baking & listening to Christmas music. Only a few more days until Christmas & we're all very excited. What a year it has been. Last year this time, things were much scarier. All we knew was that the docs were concered about Emma...she was delayed, lacked any proper reflexes, & was having what was thought to be seizure activity. We were only starting out then, on this journey...referrals to a neurologist, blood tests, an MRI, and therapy. It was SO much to take in & something you can never prepare yourself for. Even though we're still searching for a lot of answers, we know so much more now than we did a year ago. Last Christmas is a bit of a blur for us...I feel bad that the joy of Emma's first Christmas was blurred by the confusion & fear of what was going on. BUT, we are surely making up for it THIS year by enjoying every moment & making precious memories. Emma has been through so much this past year, and has come through it all still smiling & shining. She is amazing!! Anyway, it's been quite a year & we're just celebrating how good things are going. Hope everyone is having a good weekend, and that you all are able to take some time to sit back & enjoy the holidays.

Well, no appointments other than therapy this week for Emma (woo hoo!). Madi will see Dr. Brown (GI) on Thursday for a follow-up. Other than that, it's all wrapping, baking, cooking, & enjoying! Take care!!

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Friday, December 16, 2005 10:48 AM CST

Hi everyone,

I was coming to post that Emma still has not gotten the Rett test & details on that. But, that can wait.

We have a link on Emma's page to Eli's Angels, an amazing charity that helps kids & babies with metabolic & mitochondrial diseases. Ann & Chad Kurtz started the foundation & work countless hours to keep it going. I posted a couple of weeks ago about the passing of their dear son, Eli. He was only 2 1/2 & it was absolutely heartbreaking to learn of his loss.

Well, today I received an email & then went to Eli's page & something devastating has happened: Ann & Chad's house was broken into. The thieves stole Eli's signed Broncos jersey & hat, video cameras & digital camera WITH tapes & memory sticks of Eli...most were pictures of Eli's last days here on Earth. This is a devastating thing to happen to an amazing family that is still in the midst of healing from losing their son far too early in his life.

Please visit this link to hear the story & PLEASE pass it along to anyone you know (especially those who may be in the Denver area):

News Story - 12/15/05

Please continue to keep Ann & Chad in your prayers. They need them now more than ever, and especially through the holidays without their precious Eli. If you can, please visit their page & sign the guestbook: Elijah's Page

Also, if you are in the good fortune to be able to donate money to a cause this holiday, please visit Eli's Angels & offer your support. This charity touches its members firsthand. A few of Emma's pals are members, & they are overjoyed when they receive packages, cards, books, & more from Eli's Angels. It's a VERY small charity, and every little bit they receive helps & has a direct impact on those families.

THANK YOU!

Wednesday, December 14, 2005 10:50 AM CST

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Hi there! Madi had her Christmas Program at school last night...it was great!!! Madison sang & danced her little heart out. She played the tambourine & everyone agreed she was THE kid to play it!! It was cute to see all the children up there, singing, dancing, & having fun. They did a great job!!! The video Josh captured of Madi last night is absolutely priceless. If I ever figure out how to get video up on this page (I know it can be done!!!), I will share it with you all. Emma had a good time, she liked seeing all the kids, the music, & clapping.

Look at Madi go...

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Thank you Honey & Pops for coming! Madison was so happy to have you there!!

Emma planning some mischief (I'm sure! LOL!)...

Emma had OT yesterday & she is doing well. She LOVES playing in the bucket of rice. She does puzzles, coloring, playing with blocks, etc. to help her fine motor skills. She gets to play with slimey things, shaving cream, the swing, etc. for her sensory issues. She is having more fun with OT as time goes on. No PT this week (go EMMA!), she'll have it next week & then it should be only once a month after that. HAPPY DANCE! One of the funniest things lately is to tickle Emma's thighs--she goes NUTS!!! Her laugh is so hearty & contagious, it's beautiful music!! Anyway, it is just a riot tickling her. Up until recently, Emma was not ticklish (for who knows what reason), so we see it as a VERY good (& entertaining!!! LOL!) thing!! She is also toddling around, getting into as much trouble as she can! We were in Target yesterday in the boxed card aisle, and she decided to start pulling as many boxes as she could off the shelves. As much as I knew she should not be doing that...it was cute to see & just awesome that she was out in a store, walking around, grabbing things off the shelf!!! It's nice to see her being a toddler!! This poem has been emailed to me by a few friends over the past few months. As Emma grows, I'm really understanding it!

SPECIAL MOMS

When a toddler gets into the plant pot dirt, a special mom appreciates how well their fingers work.

When a child yells "NO!" A special mom enjoys the sound of their spoken word.

When a child must wear a helmet when riding a bike, a special mom is grateful that the helmet is not being worn to prevent injury from a seizure.

When a child plays the `chasing game' with mom in the grocery store, a special mom is thankful that her child can run at all.

When a child makes a mess while eating their lunch, a special mom is glad she does not have to put their lunch through a feeding tube.

When someone's child is having a `tantrum' in the shopping mall, a special mom never jumps to conclusions.

When a child gives themselves their first haircut, resulting in an embarrassing head shave, a special mom is blessed that they are not bald because they're going through chemotherapy.

When a child listens to annoying rap-music, a special mom enjoys that her child can hear any music.

When a child is at the hospital for an ear infection, a special mom feels blessed her child isn't in congestive heart failure...again.

When a child complains about taking an awful tasting cold medicine, a special mom is relieved that it is not heart medication, seizure medication, anti-rejection drugs or something worse.

When a child in a wheel chair is out for a stroll with mom, a special mom understands that it may not be a good day to ask questions.

When a child needs extra tutoring to get through math, a special mom is relieved that her child doesn't need a team of seven people and five pieces of specialized equipment, just to get him through the school day.

When a child needs the light on at bedtime, because they're scared of the dark, a special mom is thankful that her child does not live in constant darkness.

A special mom looks at her special child with pride, while strangers often look at the special mom with pity.

A special mom appreciates all the things typical children do, whether naughty or nice.

A special mom rarely complains about the 45-minute wait at the doctor's office for a check-up, when she's spent months at a children's hospital with her dying child.

A special mom would never feel disappointed that her healthy newborn was not the gender she had hoped for.

A special mom views the world through special eyes, ears and hands.

By Luanna Buburuz

More good news...Emma saw her pediatrician yesterday & her ears are improving. And, BIG RELIEF...both tubes are IN!!! YEY! We didn't even want to think about dealing with tubes during the holidays! So, we got great news. The pediatrician's office was unable to do the tests for Rett & Angelman...they didn't have the packaging to ship the samples to Baylor (Houston). SO, we'll have to get that done at the neurologist's office, hopefully this week. I'm waiting to hear back from him to see when that can get done. They did draw Emma's Acyl Carnitine Profile yesterday, so at least that's one down.

Thanks for stopping by. Don't forget to sign the guestbook & let us know you were here. It really makes us smile when we read your entries. THANKS!!!

Saturday, December 10, 2005 8:11 PM CST

Results are finally in...

Emma does NOT have Smith-Magenis Syndrome. I received an email today, the test results were negative. We'll get the full report in a few weeks.

So, now all that waiting (again) & still no answers. It's an odd feeling Josh & I have right now. 50% happy the results were negative, 50% bummed...we'd have the answer, know what to expect, & be able to move on. As I've said before, once the doctors mention some possible diagnoses to you, you start to put them in order of ones you'd be 'okay' with. This was in the 'okay' list. But, as I learn more about Rett Syndrome & other conditions that at first seem so frightening, we've learned that you can't just lump your child into the statistics. Each child is different, limits should never be set--whatever the diagnosis. We have a feeling that our Emma will overcome any odds that stack up against her!!! She has a knack for doing her own thing, surprising the docs, & certainly walks to the beat of her own drum!!!

Josh & I have taken a long & collective deep breath. Now we do know our next step & there is some relief in that. I'll take Emma in on Monday (hopefully) for the Rett (MECP2), Angelman, & Acylcarnitine tests. Then it's a loooong wait. I think the acylcarnitine won't take as long, but the other two can take as long as 8 weeks for results.

Thankfully, we have the holidays & our girls to make the time go quicker!!!

Emma has a double ear infection & upper respiratory infection. Luckily, no fever yet, so we're only doing antibiotic ear drops. We go back in 2 weeks to make sure all is well...they are unable to see her right tube at this time. Her doctor is hoping it's just blocked by drainage & that it is still intact. She isn't feeling too good, poor baby. Still loving the tree lights & Santa ('ho, ho, ho!'). Hopefully this cold will pass quickly.

Thank you all for checking in, asking about the results, & for your thoughts and prayers. We have felt so much support from our CB page, it is amazing. Take care.

Wednesday, December 7, 2005 10:29 PM CST

So, no snow (only bad ice!) & no results. Madi was going stir crazy, and if she sees the weatherman on the street--all I can say is watch out! She was VERY upset that it did not snow. But, we had fun baking cookies & playing.

Emma was feeling a little bit better today. She enjoyed the reindeer sugar cookies we made. I did get an email from our geneticist, and I had to share. It's neat getting to email a doc, so we've been back & forth about the tests & Emma. I wrote him a few days ago saying Emma was having a good week & how enthralled she is by all the Christmas lights & decorations. Anyway, here's his email (he's only in his actual office Th & Fri):

"I tracked down Emma's sample with Quest, but they won't give results over phone--should have faxed to office so I'll relay them tomorrow or Friday. There's nothing like a young child at Xmas, especially one with disabilities--I think old Dickens knew that, didn't he? Best wishes"

Looking forward to hearing something THIS week!! Mostly, I found what he said to be right on. Something I hadn't thought of--how Tiny Tim is the one who brings everyone together & helps his family and Scrooge at the same time. Kids with special needs are really special kids!!! I actually got teary-eyed reading what he said! There is certainly a magic in the air...and I see things inside of Emma that you don't see or feel in other kids. It doesn't take words or strength for her to express the joy she is feeling & to know she in the true Christmas spirit.

I dug up some photos of our Christmas last year. Wow, how much Emma has changed! She's defenitely more toddler than baby this year!!! Thought you'd enjoy the look back:

Santa Emma

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Look at all my new toys!

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Grandpa & his Texas grandkids (Tomas, Madison, Emma, & Jacqueline)...isn't this a great 'capturing the moment' picture. You can't help but smile along with it!

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Tuesday, December 6, 2005 9:22 PM CST

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That's about how I feel right now...lol! STILL NO RESULTS! Yes, we're going nuts here!! Of course as each days goes by with no word, it makes me wonder: does that mean it was positive & they're just doing more tests to be more specific...OR does it mean it's negative because it's taken so long????? WHO KNOWS?!?!?! I'd just like an answer by the weekend at this point, that would be nice.

Emma wasn't feeling well today again--major boogie nose & drool city! Poor baby, she had a rough day. She did really well at OT, is really getting into sorting blocks! PT went well too--Sarah was thrilled at Em's walking. We are cutting back to every other week (woo hoo!), Emma is still weak (she can't get herself up from laying down, sometimes she'll roll over, but she can't pull herself up). Sarah said if she continues to progress & do well over the next 2 weeks, then we can go to 1 x a month. That would be really great! She is not going to release her, she wants to monitor Emma because last time Emma was released, we ended up needing to go back after a few months. It's just awesome for Emma to be 'graduating' from PT!!!

Our visit with Emma's GI went GREAT too! He's glad her weight is staying steady & said that he feels her slow growth (snail slow!) is related to her diagnosis/syndrome & not caused by malnutrition or any other problems. We're to keep doing what we're doing & see him in March. YEY! He did tell me to prepare for a hard winter with Emma & colds. OH JOY! But, we have the gtube to make sure she always gets her fluids, formula, & meds. We're hoping her aspirating will get better, he'll repeat her video swallow after our next appt.

We're supposed to get snow, ice, and/or sleet all day tomorrow. Madison is VERY excited. She's dreaming of snowmen & snowball fights right now, I know it!! It will be fun if we do get snow, I'd love to play with the girls. We'll bake cookies & have a fun day either way. We tend to get ice here, & I hate that--so dangerous! Snow would be COOL!

Thank you everyone for checking in! Hopefully I'll have some snow pictures to add next time!!! TAKE CARE!

Monday, December 5, 2005 8:50 PM CST

Okay, still no results, but I wanted to write a real update in here! I had just a few minutes earlier, I did want everyone to know that we still didn't have results!

So, anyway...Emma is sick (yuck!). She has a runny nose & cough and by the end of the day was just miserable. She started out the day fine...this seems to always happen. Out of nowhere she gets sick. I hope this leaves as quick as it came! I've got her humidifier going & so far she is sleeping comfortably.

She is loving her new talent of walking! She takes steps here & there...everywhere! We are sure we can 'officially' celebrate her walking. After those weeks of none, we didn't want to jinx it! She is doing wonderful! Of course today, I realized the hazards of walking & being sick. She fell so many times, hit her head twice. In the past when Emma has gotten sick, it has affected her (trouble crawling, not rolling over, etc.)...and that was very apparent today! Poor thing, I wanted to put a helmet & pads on her.

All in all, Emma is having good days lately. We still are seeing the hand-holding, squeezing, etc. And she is doing odd breathing things. But, we're trying to not think too much of any of the 'odd' things she is doing (she's a toddler, afterall...lol!). I'm anxious to get the SMS results & get the Rett testing done (or not have to do it, with a positive for SMS).

Emma is our little elf, I've decided. She LOVES all the Christmas decorations, lights, etc. She now says 'ho, ho, ho' when she sees Santa!!! Too cute! And signs "tree" & "reindeer." Luckily, my mom sent Emma a signs board book & us sign flashcards. She wants to communicate so badly, so the flashcards will help us learn as we go along. It's tough learning a new language while you're also teaching it!! -Especially when your student learns quicker than you! LOL!

I wish you all could see her when she looks at the trees (the girls have a small one, & then there's the family tree) & the lights outside. And how adorable she is signing. She is just so funny & it's been awesome seeing her get so excited about everything.

OH! She ate a jar & a half of babyfood last night!!! YEY! That is the most she has eaten in MONTHS at one time (well, except for chicken nuggets!). She LOVES peaches. She's also eating Fruit Loops lately too. We are doing another dairy trial...so far so good! We are keeping our fingers crossed that continues. So, slowly but surely she is expanding her diet. GO EMMA!

We see her GI doctor tomorrow. It will be nice to tell him about her new foods & that dairy is being tolerated thus far. Pray that she's grown some, that would be a great bonus!!

Have a good week. I will post if/when we get the results. Thanks everyone for checking in!!

Monday, December 5, 2005 4:10 PM CST

No results yet...

The geneticist reassured me that the lab did not lose the sample (2 prior tests, for other things, have been 'lost' or tested incorrectly...argh!). SO, we are still waiting. Even he felt they should be in last week, but we're guessing with the holiday, things could be a bit slower. I really would like the results this week, so if need be we can do the next tests before it gets any closer to Christmas.

Well, hope ya like the Christmas theme! Will try & add some new pix too. Thanks!!!!

Friday, December 2, 2005 5:52 PM CST

Another (non) update! LOL! Still NO word. Just emailed our geneticist... We were hoping for the answer before the weekend, oh well. We'll stay distracted & busy by decorating our tree this weekend. Our lights are up outside already, the girls LOVE it. Praying for an answer on Monday...

Going to update the website this weekend with a Christmas theme & some new pix. Will email y'all when it's done! Take care.

(((HUGS)))

Thursday, December 1, 2005 5:28 PM CST

Just a (non!) update...no test results yet!!! We thought they'd be back today, so I know some of you were awaiting an email or phone call. No such luck...Josh called the geneticist this afternoon. He will contact the lab tomorrow to see if the results are there (they SHOULD be!). We are just praying that we'll find out something by the weekend...in the past, a few of Emma's labs have been processed incorrectly, so we waited then needed to re-do them. Let's all hope that's not the case again!!!

Thank you for all your thoughts & prayers. Emma is doing great--loving that big girl walking thing! She's very much a toddler today--tantrums & all! ;-)

TAKE CARE!

Wednesday, November 30, 2005 9:18 PM CST

Hi there. I am so very happy to report that our Emma is WALKING!!! She is toddling around, taking several steps at a time. It is a beautiful thing! What makes us most happy is her proud face she has when she takes her steps!! She is very excited to be up & about independently (aka she can get into lots of trouble!!!). She'll continue in PT for a while longer, even though she is able to take the steps, she still has low-tone & will need to continue strengthening exercises. We're still not entirely sure why she leads with one side, & why she is weaker there. We'll probably never know for sure. Honestly, it doesn't matter to any of us how Emma looks when she walks, if she'll ever be able to run, or if her left side ever catches up to her right...it's AWESOME to have our Em up & walking!!!! We are so thankful for our early Christmas present!!!

We should have the SMS results in tomorrow (hopefully). I'll update as soon as I hear from the geneticist. Emma sees her GI doctor this month, and maybe an endocrinologist. But, other than therapy, that's it until the New Year. YEY!!! I'm glad we don't have any more appointments until January. Nice to have a break & just enjoy the holidays.

Emma is just loving all the bright lights & music. Every store we go to, she loves pointing to the trees & ornaments, and she wants to touch the lights!! She signs "music" & "dance" all the time. Also--now when she sees Santa, she signs "reindeer"!!! Very cute! Santa is a hard sign, & it's cute that after only a week or so, she understands that Santa & the reindeer go together!!! Madison is in the holiday spirit as well--her school is doing TONS of activities the whole month of December. I always loved Christmas, and seeing & experiencing it through our kids is just the best!!

Please continue to keep Eli's parents, Ann & Chad in your thoughts & prayers (please see back journal for link). Thank you.

Monday, November 28, 2005 5:11 PM CST

It is with a heavy heart that I ask this of our friends & family...

I want to ask all of you to keep the Kurtz Family in your prayers. Their son,Elijah was called up to Heaven on November 25. Eli had Leigh's Disease, a mitochondrial disorder. His mother Ann founded Eli's Angels (see link above), a wonderful foundation. Ann is an inspiration to me, she is full of grace & compassion. Please pray that Ann & Chad find comfort in the days ahead. Thank you.

Wednesday, November 23, 2005 10:53 AM CST

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Hello! Emma had her 18 month well visit yesterday. Still cannot believe our baby is OVER 18 months old. Wow!! The appointment went well, Emma looks good. Here are her measurements: 20 lbs, 7.5 oz. & 28.5 inches long. Her weight is in the 5% (YEY!), her head in the 75%, and her height is not on the chart (meaning less than 3%). As always, not really sure what that all means! We are very happy she is staying above 20 pounds & is on the charts for weight. Again, we will monitor her growth to see if it becomes a bigger concern (slow growth vs. no growth). Her being small could very well be part of whatever it is she has--either because of a common trait of a syndrome or due to her body not absorbing/digesting nutrients properly & causing poor growth. Josh & I are just thankful her weight has not slipped. Of course, we'd all like to see her gaining some more, but we're being patient!

Final word on her kidney is that things look good (did not get to see the doctor last week, so we were a bit hesitant to celebrate!). She is off the Sulfatrim (& back to being constipated...lol!), we go back in 2 months for a urine sample. That is WONDERFUL news!

More GREAT news...Emma is working on taking some steps once again. GO EMMA! Sarah worked her very hard at PT this week, bribing her & forcing her to take some steps on her own. She is looking more steady on her feet, the braces are helping. The weakness is still a factor with her steps. But, it is awesome to see her trying again. Will keep ya posted on her progress!

We're still awaiting results from the SMS/Deletion 17 FISH test. Each day is getting more nerve-wracking, I think because we know the results will be in any day now. The diagnosis of SMS makes a lot of sense for Emma, she fits the picture. If the results are negative, Emma will have blood drawn to rule out Rett Syndrome, Angelman Syndrome, & Acyle Carnitine Deficiency (sp?). We are finding that once doctors have a better sense of your child & their symptoms, the group of diagnoses they contemplate for you are so similar, your child can fit so easily into any of them. And, all along, you have to remember that NONE of those may be THE diagnosis. We know that we may not have an answer anytime soon, but we are hopeful. Josh & I just want to make sure we have all bases covered and that we are doing ALL we can for Emma.

I've taught Emma the sign for reindeer this week, she is trying to do "Santa," and she has also picked up "table," "tree," & a few others. We watch Baby Wordsworth (thanks Aunt Cristene!!) & practice our signs. Emma is doing great this week. Her sleep cycle is wacky again (up from 11 pm until 5 a.m. on Saturday pm, then awoke at 7 am on Sunday!). We are going to get our Christmas lights & decorations up this weekend. Madi is excited of course, and I know Emma is going to go nuts for all the lights. We are very excited for the holidays. Emma is such her own little person, and it will really be neat to see Christmas through her eyes!

Have a great Turkey Day! I've been fighting a nasty cold for a few days now, so I hope I'm feeling better. No matter what though, I'll be watching the Macy's Day parade on TV. Madison loved it last year, and I know Emma will enjoy the dancing & music. Take care!

Happy Thanksgiving Everyone!

We hope you all have a wonderful & relaxing day.

Thank you to all our family & friends for all their support and love. We are also very grateful to all the amazing CB families we've gotten to know these past few months--your support & encouragement means so much.

Josh & I are thankful for our two sweet & unique daughters. Madison is so full of life, with her singing & dancing, and she is so kind to her little sister (very protective too!!). Our little Emma brings us so many smiles, she has taught us so much in such a short period of time. After our agonizing time in the PICU with Emma in July, we treasure even more every hug & kiss & smile from our girls.
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To our family in New Jersey, South Carolina, & elsewhere...we miss you always, but especially at the holidays. Sending hugs from Texas!!

Love,
The Markham Family
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Wednesday, November 16, 2005 10:16 PM CST

Phew! Some good news... Sorry this is so late, my friend Janice & I are having a garage sale this weekend (hoping we earn some cash for Christmas & Neocate!!) & we were getting that stuff together.

Anyway...we had Emma's urology follow-up & things look good. She can come off of her antibiotic! Yey! We will go back every 2 months for a urine analysis, to make sure things are clean. Obviously, we have to be on the look-out for signs of a urinary tract infection. But, so far, so good. Everything is as it should be, this was a BIG relief!!!

Emma is having a good week. Waking up SUPER early...but thainkfully playing in her crib. She has been a bit more sleepy during the day. Still only able to do that one step, but she is wanting to walk while holding my or Josh's hand more. That is good. Her AFO's (or SMO's!) are great, she likes them, gets very excited when we put them on!

Thank you everyone for checking in on us & for your continued prayers for Emma. We appreciate it all so much.

Still awaiting the SMS results...yes, Josh & I are starting to get VERY anxious. I think, though, we may not find out until after Thanksgiving. We'll keep ya posted...

Monday, November 14, 2005 1:17 PM CST

Happy Monday! We had a good weekend. We took the girls to the mall yesterday, they were having a puppet show & grand opening for a new soft play area. Emma LOVED the play area, especially the tunnels & slide. The girls enjoyed the puppet show & Madison got to chat with Santa for a bit (Emma gave him a very abrupt high-five, but was more impressed with the lights & trees!!).

Emma got her AFO's (or SMO's...they are technically SMO's, they are lower, just above her ankles, but the company calls them AFO's...go figure!!). She does not seem to mind them at all. We got her some special sneakers too, so the braces fit inside. These shoes light up & are very cute. We are calling them her 'magic shoes.' No walking yet, but we are still hopeful this is just a phase.

We're hoping to hear from the geneticist this week for the SMS test results. It could be anytime in the next 2 weeks. If it is positive, we have an answer. If negative, we'll do the MECP2 test for Rett Syndrome & Dr. Wilson mentioned another type of genetic screening we could discuss.

Emma goes for her renal sonogram tomorrow, to see how her kidney(s) look following the Deflux injection last month. We see the urologist on Wednesday. Hopefully, her kidneys will be the same size, or at least her enlarged kidney is smaller than it was before. This would mean her surgery worked & we would just need sonograms every 6 months or so for a while to make sure things stay that way.

I cannot believe Emma is now 18 months old!!! She is looking older in her face, and I think she hit a growth spurt--she looks taller to me. We go for her well-visit next week. Anxious to see her weight & height.

Have a great week. I'll update after her urology appt, and sooner if we hear any other news.

TAKE CARE!

Thursday, November 10, 2005 2:32 PM CST

Hi everyone. Sorry I haven't updated in a while. It has been hectic here. Emma had quite a cold last weekend, it only lasted for 2 days but it was nasty! She even threw up (yikes!). Not to get too graphic, but vomiting with a fundo is very difficult to watch. It is slow & Emma wretches for so long, eyes tear up, & she just looks miserable. Anyway, throwing up seemed to help, she started to look & feel better after that.

Thanks Denise for helping me clean up! And, for taking Madi for a sleep-over & to see Chicken Little. She had a BLAST! Madi is sick now too, but I think she'll be back to school tomorrow. Whatever is going around is bad for a day or 2, then goes away. Better than sticking around for a week!

Well, Emma is still not improving as far as walking goes. We are all hopeful it is some odd developmental thing & that before too long, she'll be back to taking those steps. A few things that are concerning is that she wants to walk, she'll attempt a step & just fall. She is not standing up on her own very much either. Also, (not sure if I mentioned this before) her left shoulder now sits lower than her right, she slumps slightly to the left. We know she favors her right side, & this seems to be her stronger side as well. The issue is that this weakness on her left seems to have gotten worse over the past few weeks. When you walk with her while supporting her under her arms, she leans to the right, quite exaggerated. Her PT is baffled, and she is working hard with Emma, trying to figure this out & help her. PT is becoming a struggle for Emma, she gets very frustrated when we try to have her walk. Please keep praying this is a phase Emma is going through & nothing more.

OT is also something Emma would probably like to do without. But, for different reasons! Her VERY short attention span (think gnat!) plus her short temper & easy distractability equals one unhappy toddler!!! Deborah the OT takes it all in stride & assures me that Emma's tantrums are nothing compared to some other kids who scream for the whole 45 minute session! The terrible TWO's are defenitely arriving early!!!

Speech went GREAT this week. YEY! Emma was copying sounds & enjoyed some mandarin oranges. And, she helped herself to lollipops. She now understands that she can get candy at speech...especially when she finds the drawer with the candy!!! LOL!! She has found her "m" sounds (muh for more, working on 'mama' we think!!!!). She is signing "mom" LOTS now too. And she can sign "help," "please," "hold me/pick me up," "drink," "eat," "tree," "book," "Shh," and "dance." She picks up signs in no time. We do have to interpret her signs sometimes, like a parent does when her child is learning a new word & says it in their own way. She'll do a sign a few times & Josh and I try to figure it out. Then one of us will & we'll say "OH!! That's what she's trying to tell us!!" It funny. I picked up a new signs book & am trying VERY hard to learn as many as I can. A lot of Emma's frustrations still stem from her being unable to communicate fully. I need to learn Christmas signs (Santa, gifts, reindeer, Snowman, etc.) since we are getting geared up for the holidays now.

Still one of the cutest things is Emma's use of the signs "all done" & "please." She thinks that no matter what, "all done" means all done (with food it does...but not so during therapy, a doctor's visit, etc.) & "please" means she gets whatever she wants. When this does not happen, woah, Emma thinks life is very, very cruel!! Almost without fail, as I am getting her into her PJ's at bedtime, she signs "car" and nods her head at me ("c'mon Mom, let's go for a nice drive & forget this whole bedtime thing!!"). Nice try!!

Thank you everyone for stopping by & checking on Emma, offering your support & prayers. It means SO much to us. Just knowing so many loving people are thinking about our Emma, I can't explain how amazing that feels. THANK YOU!!!!!

Thursday, November 3, 2005 7:25 PM CST

Hi everyone. Just a quick post & to ask for some extra prayers for Emma. Nothing major is going on, just some concerns. She is no longer taking the steps that she was (she was up to 3-4 steps walking between Josh & I). She can take 1 step & then she falls. She only attempts to take a step once or twice a day. Also, the weakness in her torso appears to be worsening, or at the least not getting better. Her left shoulder is now slightly lower than her right. So far, it does not appear to be scoliosis, just related to her weaker right side. If you walk with her holding her right hand, she does good. With her left hand, she can barely walk at all. She has been sleeping A LOT lately...a nice break for us, but a little worrisome too. She is aspirating again, so we are back to thickening her liquids & doing more with the gtube (thank goodness for that).

This could all just be a lull in her development, a normal toddler thing, or a combination. We just don't know & won't know until she either starts doing better, or continues this way. I'll keep everyone posted. We just pray she has a bug or something, and that she is not getting weaker. Seeing her walk was just AMAZING & we really want to see her stepping again VERY SOON.

THANK YOU for all your thoughts & prayers. Take care.

Monday, October 31, 2005 9:41 PM CST

HAPPY HALLOWEEN!

We hope everyone had a fun & safe time. Our sweet ghouls had a howl of a time. LOL! They are both sound asleep, worn out from all their trick-or-treating.

Here are some pix...

Emma & our pumpkin. Daddy & Madi carved it, this side was the one that Madison designed all by herself!
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One very sleepy flower...
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Emma especially enjoyed rearranging & sorting the candy treats!
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Here are some pix from Madi's Halloween party at school...

Madison's classmates SWARMED around Emma, it was funny! She was VERY popular, the kids couldn't get close enough & were complaining they couldn't see the baby. It was real cute. They all wanted to play with her, read to her, etc.

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GREAT NEWS!! Emma had a good speech session today. She said "muh" for more and "bah" for bye. Christen is working more on her oral motor skills, especially that we are having to thicken her liquids again. We found out that Emma LIKES sour apple (flavor spray on the NUK brush, to 'wake up' her senses & mouth). I am going to order a tool that looks like a pen with an elephant on top, it vibrates & will help strengthen her mouth. She even got to gnaw on a Tootsie Roll!!! This evening, we worked with a Dum-Dum lollipop. So, even Emma got candy for Halloween!! Well, she REALLY likes this candy stuff!! It was really great, normally she is so orally defensive, but she'll let us work inside her mouth with the sweet & sour stuff. YEY!

Thursday, October 27, 2005 6:12 PM CDT

Hello. Josh & I (Emma too!) met with our geneticist, Dr. Wilson again today. He saw Emma a few months back, and at that time could not think of many possibilites of diagnoses for her (he did test for Del22, which was negative). Well, today, he offered several diagnoses, though none cut in stone.

He agreed that the Rett test would be beneficial, as would adding on the test for Angelman Syndrome (although HIGHLY unlikely Emma has this). He is also going to test Emma for "Smith-Magenis." I have never heard of this before, and just read up on it online. Emma does fit this profile (but she seems to 'fit' lots of profiles!), so we'll do the test (tomorrow) & see what the results are. Because we can do the Smith-Magenis test at a lab where she'll get her allergy testing, we'll do this test first. If this comes back negative, we'll do the Rett & Angelman tests (they need to be done specially & sent to Baylor). One interesting note is that in SMS (Smith Magenis Syndrome), children tend to hug their arms or hold their hands when they are excited. We have been concerned about Emma's midline activity (hand-holding, wringing, etc.) & that it pointed solely to Rett Syndrome.

Dr. Wilson also mentioned Opitz Syndrome as a small possibility (there is no test for this), a diagnosis of this would be made as Emma gets older, based on her symptoms, clinical presentation, and negative test results on other tests. After reading the paperwork on it, at this point, Emma only loosely fits the profile.

A lot to take in, but Dr. Wilson was kind & understanding like last time. He seems to really understand how we as parents feel about needing a diagnosis & how we feel that is the answer to making sure Emma gets all she needs to achieve all she can. Our neurologist has told us at the last visit, that if Rett Syndrome is ruled out, there's a high chance we may never know what Emma has. That was hard to hear, if you have a diagnosis, you can help prepare for the future & be sure you are doing all that is humanly possible to take care of your child.

Anyway, as we left, Dr. Wilson said to me "We will be in touch, you have my email too if you need anything. We'll be in contact for a while & as long as we need to. We'll keep testing & thinking until we both agree we just can't find an answer." This doctor really has compassion. It was nice to hear. The info on SMS is a lot to take in...nearly as much as Rett Syndrome is. All we can do now is wait on test results. But, I do feel we are going forward, and that is a relief.

He also added that at this time, he does not think Emma has a metabolic disorder. He feels that with her repeated normal metabolic profiles & the fact that she does not have a history of illnesses typical with a metabolic disorder, it is unlikely she has one.

We saw the allergist yesterday. He has prescribed Nasonex nose spray & Zyrtec for Emma, this should help her congestion. He does not, however, feel her constant congestion has much to do with the retching & choking. He asked about her aspirating, feeling that was the cause of the problems. A light went off in my head & I was like "DUH ME!" For whatever reason, Emma is penetrating or aspirating (probably), leading to choking and gagging, then retching. We are back to thickening Emma's juice (have seen a HUGE improvement today!) & just carefully monitoring all she eats by mouth. So, while the answer was right in front of our eyes, we took the long road getting to it!! BUT, it was worthwhile seeing the allergist. I think the Nasonex will help. Also, he is doing allergy testing, to rule out what may be an allergy or an insensitivity. We return in a month, lab results will be in prior to that.

I am glad tomorrow is Friday & that we have no appointments. Emma will get her labs done, but other than that, we can just hang around. On Saturday, Madi's school has a Fall Festival & before that we are going to our neighbors for a party. Fun!!!

This weekend, I'll post pix of Madi's Halloween Party at school. She looked like the cutest little butterfly. The STAR of the hour was Emma! The kids all surrounded her...it looked like a famous person had entered the room--they mobbed her!!

Madison seems to be feeling better, she went to school the past 2 days & has not gone to the bathroom (no BM's at all, she'll probably go back to her constipation! Oh dear!!). We're still waiting on the cultures, but I'm hoping it's done & over with, whatever was bothering her tummy.

****NEWS ALERT: Madison is in L-O-V-E! Yes, she has a CRUSH on a boy named Cody. She told me about it yesterday & today when I picked her up from school, she & Cody hugged like 3 times. He looks at her with puppy-dog eyes & Madi is all smiles around him. It is actually rather cute. Don't tell Josh though!!!! LOL!!!! Madison gave me just the laugh I needed after a rather heavy appointment earlier today.

Tuesday, October 25, 2005 2:57 PM CDT

Here are pictures of our pumpkin picking this weekend. We didn't make it to the fair (we guess it just wasn't to be this year!), Madison is still having a lot of GI issues. Anyway, we did get out for a little bit on Sunday. it was a BLUSTERY day indeed!! I guess perfect pumpkin picking weather! But, brrr...it was chilly! We had been waiting & waiting for some fall weather...it was in the 50's & windy. The girls had a blast at the patch. They picked out pumpkins and played in a bounce house. Our little daredevil (Emma) was actually jumping out of my arms to get in the bounce house, Madison was not too sure at first. She finally decided to go in after Emma was crawling all over inside. Because of the weather, we were the only people there, which was nice. Emma got to enjoy the bounce house with Madi.

Here are some pix...

Emma has continued to take steps here & there. She is even standing up by herself (getting on her hands & feet, then lifting herself up...that is a MAJOR accomplishment!!). Today at PT, she took almost 4 steps on her own! Here are some pix of the girls at home...

Emma taking some steps to Big Sis Madi!
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I had to snap a picture of Emma on the coffee table! She look quite annoyed at us when we told her to get down!!

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Emma was very quiet again yesterday at ST. She finally said "bah-bah" (baby) in Speech! Actually yesterday Emma was very distracted & unable to stay on task (moreso than usual). We tried foods again...diced peaches, graham crackers, and apple sauce. So far, we haven't been able to figure out what it is about most foods that Emma does not like. Sometimes she likes spicy & flavorful, other times bland, and textures vary. But, we work on it everyday. She gets frustrated, but hopefully she will eventually start eating more orally.

Emma started OT at Baylor today. It went well. We got her Evaluation back...a little bummed out of course. But, thank goodness we have her in therapy now & not later. She is 5-6 months delayed in fine motor skills (object manipulation & grasping skills) and 3-4 months delayed with visual motor skills. In the area of Sensory Processing & Integration (this eval is more difficult to understand, but I'll do my best to explain it as the OT did!):

Emma's sensory performance as it relates to daily life is:
For Low Registration, Sensory Activity, Sensation Avoiding, & Low Threshold, Emma shows a "Defenite Difference," meaning she scored below the point of 2 standard deviations below the mean for children without disabilities. She is 'typical' for Sensation Seeking. I'll try to have my OT write some more info down on this, we reviewed it briefly today (wanting majority of our time to go toward the therapy). On the Sensory Profile (Emma's response to basic sensory systems), Probable Difference (scores at or above the point of 2 standard deviations for children w/ disabilities) was noted in visual, tactile, & oral sensory processing. Defenite Difference was noted in auditory & vestibular processing. Emma prefers to avoid sensory experiences. Emma may demonstrate difficulty interacting with her environment appropriately (i.e. aversions to hair washing, nail-clipping, crowded areas, new environments, & prone positioning). Behaviors observed were: short attention span, cooperative, easily distracted, nonverbal, and anxious wtih new people.

Lots of info, I know...but just in case ya wanted the details. So, we have a full eval & a plan. That's what I really like about Baylor, they give you a 4-5 page evaluation for therapy, it is full of information, and has a very detailed goal & timeline. Emma was wanting to do her own thing during OT (lol!), she is so sweet & yet so stubborn at the same time!!

After OT, Emma had PT & she did really good. She showed off her new skill of standing up on her own to Sarah. Sarah did stretching exercises with Emma & walking. The main area of concern is still her low-tone, especially in her back (she slumps & does not have the range of motion she should). Emma will not twist or reach back with her arms, so we'll start doing some games to get her to do so. SMO's will be back in 2 weeks. Once Emma is stronger & gains more balance, I really think she'll will end up doing more running than walking!!! LOL!! Wouldn't that be a great thing???

Please keep our Madi in your thoughts. She has had diarrhea since last Tuesday. They have pretty much ruled out a virus, because of the duration & the fact that she doesn't have any symptoms. She feels perfectly fine & is active until right before she has to go to the bathroom. They are doing cultures to try & figure out what is going on. We are hoping it is not the flare-up that we were told may come (if she has ulcerative colitis). She'd be pretty young to present, so we are hopeful it's something else. Whatever is going on, we pray it is done soon. She wakes up every morning between 4 & 5 and starts going to the bathroom.

Emma will see the allergist tomorrow & geneticist on Thursday. Hopefully we will head to Madi's school tomorrow for her Halloween party (parade, trick-or-treating, & party!). I'll take pictures, for sure!

Thanks again for coming by & checking in on Emma!

Saturday, October 22, 2005 9:12 AM CDT

Well, Josh is HOME again! He was in Canada all week, the 3 of us were SO happy to see him. We picked him up at the airport yesterday evening--Madi went running to him & Emma was yelling "da" & waving her arms & legs. It was SO cute to see the girls!! I think it was probably the best welcome home Josh could have gotten!!

It was quite a week for Josh to be gone, there were SO many great things happening, some worrisome things, & we were busy. But, the girls, they were great! They both went to bed just fine, slept through the night, it was really amazing. Josh got them Mountie Bears, they are very cute.

We are headed to the fair today, it's only going to be in the low 70's (YEY!!). It will be a lot of fun. Madi got her flu shot yesterday, but seems to be fine today. Emma & I were both still under the weather yesterday, but I know I feel fine today & think Em does too.

Emma's neurologist called yesterday afternoon, and I feel better about some things & okay about others. First, he agreed (think his assistant got confused) that we can wait on the 23 hour EEG (yippee!). I told him that the hand-holding was not seizure activity as far as Josh & I could see, and he agreed. I think his assistant thought we were concerned about more seizures. Anyway, he said we can just monitor & document any suspected seizures at home for the next few months & if there is an increase, then we will do the video monitoring. Phew! As far as Emma's left-side being stronger, he said that is non-specific & doesn't necessarily point to one cause, it could just be a symptom of something. In the event that it is from a mild stroke, no test could really be done to confirm it. And, we've been assured that if that is the case, we're doing all the therapy & care we'd do. I feel much more relieved about that now!!

He is very concerned about the midline activity. I've had a sick feeling in my gut these past couple of weeks that we've seen more hand holding & wringing. Josh & I have talked about it & are trying to give her something to hold when she's doing it. Anyway, Dr. Elterman said it is very concerning & that we need to do the MECP2 test. We kind of knew that was coming, but hearing him say it & talk about Rett Syndrome again, this time with even more significance, was hard. He wants us to show Dr. Wilson (genetics) the midline activity I've gotten on tape & do the MECP2 test. We're ready to have the test done & over with. We had thought for a while we were near being 'out of the woods' as far as RS was concerned. But, the past 1-2 months, that has not been the case. Our day goes along fine & then Emma starts her hand holding & wringing and it's just really difficult.

We're focusing on the highs of our week. And, of all the wonderful progress Emma is making. I prayed & prayed that Emma would show progress in her speech & her walking before 18 months. Most RS girls start to show progression around this time & I feel that the further Emma develops, the more skills she will keep. Every girl with RS goes through regression differently, the severity & timing of it varies. Some girls regress in a matter of days, others over months. I am no expert on Rett Syndrome, I am just hopeful that Emma's regression was atypical, and that it occurred between 5 & 8 months, when her babbling ended & she was not acquiring many new skills. I am so thankful that she is in a great therapy program & that she has been in it for so long now. From what I have read, early intervention in RS is key (well, in all developmental delay) & that if we keep her active & mobile, her abilities can be above & beyond anyone's expectations.

I want to thank all the amazing Moms on Club Rett, for all their encouragement & information. You are all wonderful & inspirational!!! One of the most important things I've learned from them is that girls with Rett Syndrome can understand & it is so important to speak to them, as you would any other child of that age. Whether or not Emma has RS, this has been so valuable. When you look at Emma, her small size, the fact that she still crawls & does not speak in words, it's easy to forget her age. She is a toddler, at this age Madi was chatting away, able to tell me her needs, etc. I have to always remember that in the back of my head. At first, it felt silly talking to Emma more than babytalk. But, you realize by her actions & expressions that she does indeed understand A LOT. We have to remember that at 17 months, she does want to bring her baby doll or Pookie bear with her when we go out, she wants snacks & juice, certain TV shows, etc. Her vocalizations are picking up & she learns signs very quickly--that helps a lot.

Emma starts OT again on Tuesday, that will be good. She'll see the allergist & geneticist this week as well. Madi has her Halloween party & parade, Emma and I will attend. Emma LOVES going to Madi's school & seeing all the kids. She's going to LOVE the party!! I'll take pix today & of the party too.

Some cute Emma stories to end on a very happy note...

She is becoming MORE & MORE social each day...whether she is vocalizing for all to hear or waving her heart out, it is SO cute to watch. I think something connected inside her this past week or so & she understands this now.

For the first time, Emma made a fake crying sound when she heard a baby cry. Emma has never done this & it is a BIG developmental milestone. It was great to see!!!! Sounds funny, I was happy she was fake crying...but it really is a HUGE deal!!

She is learning to sign 'please.' And now 'more please.' We're working on 'thank you' & 'mommy' still!!! LOL! She signs 'Daddy' with no problem...of course! She can sign 'car' now too & her own version of 'down.' She also signs 'monkey' & 'bird/chicken.' We are so proud of her!!

And, drumroll once again this week: Emma said "ba-ba" while signing BABY!!! WOW!!! I know the docs won't count that as a word (they don't give her credit for her animal sounds either: quack, woof, peep, oo-oo), but we sure do! We are very impressed!

SO...Steps on her own, over 20 pounds, and "ba-ba!!!"

THREE CHEERS FOR EMMA!!!!!!!!!!!!!!!!!!

Thursday, October 20, 2005 5:20 PM CDT

Two steps again today!!!

Emma is a true Texan, doing that two-step. LOL! Dr. Kincaid got to see it for herself & was SO happy!!

Guess who weighs MORE than 20 pounds????
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YES!!! She is 20 lbs, 7 oz with shoes on!!! That was music to my ears! My jaw dropped to the floor when I saw the scale go to 20!!!! I have hoped & prayed to see it!!! This puts her BACK on the charts at 3%. So, we're sticking to her Chick-Fil-A hash browns with breakfast, Wendy's nuggets for lunch, snacks all she wants, & tube feeds. If this is working, we're not changing a thing!!!!

Emma & I both got our flu shots today. Despite that, Emma has been just as happy as can be today. She is becoming a social butterfly & quite vocal! She cracks me up...defenitely becoming an independent-minded toddler! LOL!

Dr. K gave Emma a referral to an allergist to get this nasal congestion under control. Also, she had us call the neuro to let him know about her right side being slightly weaker & her increased midline activity. Dr. Elterman called back & he wants Emma to come in for a 23 hour EEG monitoring. Josh & I have to look at Emma's schedule, but we'll probably do it the 1st or 2nd week in November.

Dr. K said that with the difference in strength, Emma may have had a very mild stroke. It obviously is just a possibility at this point, and because the weakness is mild they may hold off on further testing. Dr. K said if you ever had a "good" time to have a stroke it would be at this age. The damage is pretty much reversible, your strength, etc. gets better not worse. And, if that is the case, we are doing all the therapy, etc. she would need to address it. I guess I'm not too sure how to react to that (a stroke)...I pretty much take my cues from Emma's doctors & they are not overly concerned by it...so my thought is that while it is an important thing, it's not a major thing.

Well, enough of the yucky stuff. I want to end on a few good notes. We saw Samantha today & she is doing great, looks as cute as ever & is recovering superbly.

And...Emma is over 20 pounds & taking steps on her own!!!!!!!!!!!!!!
I can't say that enough!
WAY TO GO EMMA!!!!

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Wednesday, October 19, 2005 8:24 PM CDT

Emma did it again today...she took TWO steps from Josh's mom (Honey) to me!!! Seeing her take those steps is just so beautiful!

I'll see if I can figure out how to video tape her & put it up here. If anyone knows how, please email me!! If not, I'll at least snap some action shots of Em taking steps & show them off!

We met with the OT at Baylor today. I forget her name (I'm tired!!), but she is very nice. I don't know the results of the evaluation yet, we'll get them in a week or so. She played with Emma & observed her while I filled out a sensory survey. From what she saw while sitting with Emma, she thinks she'll need OT at least 1 x a week. OT (Occupational Therapy) deals with fine motor skills, daily living, and sensory integration. Emma was receiving OT through ECI & her OT there was GREAT. But, we didn't feel like we were getting all we could from the other ECI therapists, and that is why for now we are doing private therapy. Her sessions at Baylor are much more intensive and it is work (play for her!) from start to end.

She was a bit fussy today, she is getting some more teeth (finally!). They are coming in in the craziest order...she has her upper & lower central incisors (yes, I looked up their names!), and she has her first set of upper molars. Now, her lateral incisors are coming in (the teeth next to your center ones). So, looks like as with everything with miss Emma, she's going to do it her OWN way!!

Emma will see Dr. Kincaid tomorrow, I'll let ya know what her weight gain is. We've got a few concerns & a bunch of updates (it's only been about 2 wks since we were last there...but she's had the gi appts & test, cystoscopy & Deflux injection, dermatology, ENT, SMO fitting, & OT Eval plus med changes because of everything). BUSY EMMA!!

OH--More REALLY good news. Emma's mic-key site looks AWESOME!! The redness is GONE!!! No more Neosporin for her!! We use the hydrocortisone rx 3 times a day & it appears the granulation tissue is DONE too!!! YEY!!!!!!!!

Tuesday, October 18, 2005 3:29 PM CDT

NEWS FLASH!!!!

EMMA TOOK TWO STEPS TODAY!!!

In PT, Sarah let go of her hand & she took TWO AMAZING steps to me!!! Sarah & I were both teary-eyed. It was AWESOME!! She did it 3 more times! Then we stopped by Jill's house & she showed off her new talent to Madi & her Aunt Jill. YEY!!! GO EMMA!!! Isn't that just the best news??? HOORAY!!!

Thank you Jill for watching Madi (tummy troubles) today! Em got fitted for her SMO's (decided on those b/c of her small size, AFO's come up higher & would be a bit too overwhleming for her at this point!). She hated it, but we got through it. They'll come back in 3 weeks & that should really get her walking in full motion! The SMO's (like braces) are going to be pink, with part of it having a design of cute sheep on it. Gotta be stylish!!

Here's a blurb I found on orthoses:
" An Orthosis can be used to provide needed stability around a joint or to encourage desired movement and discourage or limit undesired movement at a joint. SMO � SupraMalleolar Orthosis � Similar to the AFO but come just above the ankle bone (the malleolus)."

Well...Josh & I got our Christmas gift early this year to say the least. I have a feeling we'll be smiling for quite some time!! The funny thing is, I don't think Emma even realizes she is walking on her own when she takes those steps. When we clapped for her & congratulated her, when I hugged her & all...she looked at us like "yeah?? What happened?" I can only imagine the look of pride she will get on her face when it sinks in that she CAN walk ALL BY HERSELF!!!!

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Monday, October 17, 2005 8:34 PM CDT

Happy Monday!

Before I go on & on with my update (lol!)...

***CUTE STUFF EMMA IS DOING:

~Signing 'baby' & looking SO adorable when she does it

~Holding her hand up to your face so you'll kiss her hand, she loves it, smiles & laughs

~Blowing kisses again (mostly to teenage boys & elderly men! Not kidding!!)

~Putting her palms up & shrugs a little to ask "what are you doing?" "where is someone/something?" or just "huh?" Her Italian heritage defenitely comes out when she does this!!!

~AND, today, she nearly gave me a heart attack. I was in the kitchen after dinner & Madi says "Mommy! Emma's going to get on the chair & fall down!" So, I assume she is climbing into the kids rocking chair. NO! She is up on the coffee table (which, by the way is on wheels!), attempting to climb from their onto a chair. We may have to do something about the coffee table...she pushes it around to wherever she wants to go. And, now I guess, will attempt who knows what while climbing it!! Maybe Evil Knievel is more fitting than Little Tough!!! LOL!

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Well, our weekend didn't go quite as planned. We still had fun. We were unable to go to the fair because of the heat (around 90 PLUS Orange Ozone days). Emma's head gets soaking wet just by being out in this heat for a few minutes. We had some family time at home, and that was nice. We took the girls to McDonald's on Friday & they were very happy about that. They also got to see their cousins, Jacqueline & Tomas and Aunt Denise. Madi even had a sleepover with them! Thanks again, Denise!! No football game either--but we watched it from home (and air conditioning!!) and had a good time. With everything being so hectic much of the time, somedays it's nice just to do nothing together!! I took some pix & will post them later this week.

Emma had Speech today. She would not say a thing the entire time. Christin was her awesome usual self, keeping Emma's attention, trying any & every trick in her book. Not a peep out of Emma...some chuckles of laughter, but that was it. I was actually pretty bummed out. BUT...I had to laugh--toward the end, Emma picked up the container of bubbles & signed 'more.' Christin kept saying "bubbles" over & over again. Emma kept grabbing the bottle, signing 'more.' FINALLY...she signed 'more' & said "buh." Apparently our Emma needs some motivation to speak!!!

We also took Emma to the ENT to see if we can get this nasal congestion issue under control. Good news--her tonsils & adenoids are fine (yey!). The ENT feels we should see an allergist. "On the road again..." LOL! With regard to her speech, he wants to see her again in January to see where she is at that point and then (if need be) do the ABR test. I'm glad he's waiting on it...I really don't like the idea of Emma being under anesthesia again anytime soon. Especially since this test is not a total necessity right now. Emma's ears work fine, her tests show they function normally. The issue may be that her brain is not transmitting sound correctly.

We also stopped by to see Emma's friend, Samantha. She is at Medical City right now having some tests done (for her tummy & reflux). She may have surgery this week (a fundo), so please keep her in your prayers. We saw some of the nurses that took care of Emma & they were so happy to see Emma looking so good!

PT tomorrow & the AFO fitting afterward. Josh & I are glad Emma will be getting the AFO's, we think they will really help & will be the bridge to getting Emma walking. Saturday she scared us a bit. Most of the day, her legs were wobbly & weak, we'd never seen anything like it before. Thankfully, she's been fine since so we're hoping it was just a fluke. She's doing some more hand-holding & wringing, which is concerning. We're anxious to see the geneticist (27th).

Thanks again for stopping by. TAKE CARE!

Thursday, October 13, 2005 5:02 PM CDT

Well, a pretty good news update!

We saw Emma's GI doctor this morning & he thinks her choking & increased retching is related to her congestion...more of an ENT issue than stomach. That is good! He also said that she probably did spit up actual formula from all the gagging & retching, but that this is sort of a good thing. Basically, the "perfect" fundo is one that does not allow reflux, but would allow someone on vomit if the body needs to. So, that makes us feel much better.

He suggested we see her ENT again, make sure her adenoids & tonsils don't need to be removed. He increased her Periactin & said she may need a nasal spray (as per ENT or allergist). Once we get her "buger problem" as he put it, under control, most of this should stop.

Also, he thinks we should go further with her metabolic studies & that our geneticist (whom he originally suggested) will be great for that (we see him on the 27th).

She is doing great today, other than congestion. You'd never know she went through anything yesterday. Little Tough!!

Thanks everyone for all your prayers. Image hosted by Photobucket.com

Wednesday, October 12, 2005 2:29 PM CDT

I just wrote a whole entry & lost it! Yuck!

Well, we are home & Emma is resting comfortably. She did in fact have Vesico-ureteral reflux (VUR), and the urine was flowing from her bladder all the way up into her kidney. The doctor was surprised to find any reflux, since both of her VCUG's were negative for it. Thankfully, he went in prepared to treat it, and was able to do so this morning. Josh & I were taken a bit aback that she did have VUR, but we are relieved that it is done & treated. Here is the website for the product they use: www.deflux.com, if you click on treatment, it will explain exactly what Emma had done today. The Deflux Injection is 85% effective, so we are pretty positive that this will be the last of Emma's kidney troubles. She'll be on antibiotics for at least 3 months, and will have a sonogram in one month (none today).

Of course, things can never go too smooth for us...

In the post-op room, we had just started giving Emma some Pedialyte through her feeding tube. She was still fussing from the anesthesia, being there, & her icky I.V. I was holding her & started to feel something wet on my stomach. I figured we sprung a leak from her tube, that it had become disonnected from her mic-key button. Well, we sprung a BIG leak...I pulled up her gown & found a pink circle on her tummy, looked down & there was her ENTIRE mic-key button. YIKES! My blood pressure skyrocketed, and I wanted to cry! I called the nurse & by this point Emma was thrashing & screaming. They gave her some pain meds through the I.V. & she felt better. A surgeon & GI nurse came in & put a new mic-key button in. So that was eventful. We were finally able to leave a little after 12.

Dr. Brown (GI) called us & they want to see Emma tomorrow. So, we'll head to Dallas in the morning for a 9:30 appointment. "On the road again..."

We do have fun weekend planned for the girls. So, please pray Emma is feeling up to it. We are headed to the State Fair (Friday) & the Cowboys game (Sunday). It is just what we all need!! I'll take pictures.

Thanks again to everyone for keeping Emma in their thoughts & prayers, especially this morning. It means more than you know. THANK YOU!!!!

Tuesday, October 11, 2005 5:49 PM CDT

Please keep Emma in your prayers for tomorrow's procedure. We will arrive at Cook's at 7 a.m. & they'll take her in at 8 a.m. It could be 1-2 hours, from the time they take her until we can see her again. It is a pic cystogram, they'll inject contrast throughout her urinary tract, bladder, & kidneys & get a full view of what is going on & why her kidney is enlarged & she's had multiple UTI's. I think Dr. Pinto will come out & talk to us tomorrow, so we should have at least some preliminary results. At 1:30 pm, she'll have the renal sonogram, and then we can go home. Please pray that everything will go well, that whatever they find (if anything) is not a big deal, and that she'll do fine with the anesthesia. Thank you.

***UPDATE***
Hello. Emma had PT today & it went well. She's not feeling too terrific (runny nose & tummy troubles still), so she was a little sad. But, she enjoyed 'playing' with Sarah & we did a lot of walking while holding hands & practiced going up & down a ramp. Emma's walk most of the time is a step then she brings her feet together & steps again, with her right leg. Sarah said it does look like her left side must be stronger, this is why she's doing that. It's interesting, because my Dad noticed around Christmas that Emma prefers her left-hand (he's left-handed, probably why he noticed this before anyone else), she still tends to do more things with her left hand. Also, her speech therapist (months ago) noted that the left side of her jaw was stronger than her right. It's just interesting. I have to call the company where we'll go to have Emma's AFO's fitted, hopefully I can get an appointment soon. I think they will defenitely help out her walking.

We saw Emma's dermatologist & he prescribed Hydone, a prescription hydrocortisone cream (stronger than OTC) for her mic-key site. This should help the irritation. He said that Emma is allergic to Neosporin (Neomycin), and that's what caused the really bad redness around the mic-key. This makes sense, the redness wouldn't be there all the time...we mainly use the Hydrocortisone, but on occasion (as per our surgeon) we were putting Neosporin on it. That was when the irritation got worse...now we know why!! He said Neomycin is in a lot of ointments, so to read all labels before putting anything on her. He said there is a small chance that this change will help the granulation tissue (fingers crossed!). The great thing is that we've gone a while since she's had to have the silver nitrate treatment, the granulation is starting to come back, but really, really slow. That's a relief!!

***ALSO: if you missed yesterday's update, Emma had an Upper GI & her fundo IS still intact (YEY!). So, that is good news. She continues to retch, choke, & she spit-up into her mouth today. We're not exactly sure why this is happening, we are waiting to hear from the GI to see what we can do to help her. She defenitely is not herself with these new tummy troubles.

Thanks again for stopping by & checking on our Emma. (((HUGS)))

Monday, October 10, 2005 5:28 PM CDT

I'm getting the feeling it's going to be one of those weeks where we have an update every day!!

Today certainly did not go as planned, but we did get some good news. Emma's speech therapy was cancelled because Christen (ST) was sick. That worked out, because I remembered I had to go do pre-op registration at Cook's for Emma's procedure on Wednesday (pic cystogram). I also had to call 4 of Emma's doctors to follow-up, make appts, etc. I called her GI doc & let them know that Emma was still refluxing, choking, etc.

As I pulled into the parking lot at Cook's (in Fort Worth), Dr. Brown's office called & said she needs to an Upper GI today. I was relieved, because that meant it would be done & over with, today. So, we registered at Cook's (took over an hour!!), they were very thorough. I honestly didn't realize this test is considered "surgery" because it is invasive, more invasive than the VCUG's she has had. She'll be asleep for it, & they'll give her nose spray before time that will relax her (so she's not upset when she leaves us). They'll give her gas (we chose grape scented...pretty funny I thought) to put her to sleep, then start an IV & a tube down her chest. At Medical City, we get to see her as soon as she is out of surgery (& stable), but here we'll have to wait until she is awake. Once she is alert & can tolerate fluids, we can get her renal sonogram done & then go home.

So, anyway, after that, we headed to Plano. GOOD NEWS: The fundo is intact! Phew, HUGE sigh of relief. I really thought it was, I think things would be even worse if it came undone, but on the one hour plus drive, I began to worry & wonder. So, I was VERRRY glad to see & hear things were okay. Emma was a trooper, hated the test, but was her usual cheery self as soon as I picked her up afterward. I can't imagine what she thinks when she is on that table, strapped down, strangers around her. I'm glad it is over, and that we got good results. I guess I'll hear from Dr. Brown tomorrow with what we are to do next. I'm told by our pediatrician & other moms that some kids with neurological issues have to deal with reflux & retching post-fundo. So, she may need to go back on her reflux meds & we just need to deal with it. At least, it will never be as bad as it was before the surgery.

So that was our marathon of a day...I was all set to make a roast for dinner, since Emma & I were going to have a quiet day at home. Silly me!!!

Tomorrow, Emma has physical therapy & then she'll see her dermatologist. I was able to get her in to the geneticist on October 27th, I'm glad it is not a long wait. We hope that we are closer to a diagnosis, whatever he wants to test for, we will do. I'm not sure if he'll want to do the MECP2 first or the metabolic studies (biopsies), or both simultaneously. We really just want to know what is going on, what to expect, and how to help Emma best.

Thanks again for signing Emma's guestbook!!! I posted some cute pix of the girls yesterday, so go to "journal history" to check them out!!! TAKE CARE!

Sunday, October 9, 2005 8:29 PM CDT

Just a quick update & some new pictures...

Emma's neurologist called yesterday (yes, Saturday!) & spoke to Josh (I was grocery shopping). I need to call him this week & let him know exactly how often Emma's episodes are occurring (1 x a week at most). He told Josh if they weren't happening more than a few times a week, the video EEG probably would not help us much. We just need to continue monitoring & if they start occurring more often, we can do the prolonged test. He also said that we should go back to the geneticist, and that he (Dr. Wilson, our geneticist) can probably handle the next phase of metabolic studies, etc. So, that is a relief. I really hope Dr. Wilson can do the biopsies or whatever further testing is needed, it'd be nice to not have to add another doctor to all this!! Plus, we can see Dr. Wilson much quicker than at Children's.

We had a good weekend, just hung out around the house, Emma really was not up to doing anything. She is retching, choking, and silent refluxing throughout the day still, she has also had the hiccups several times a day. She has not actually spit up & out of her mouth since last Monday, but other than that, things are as if they were pre-fundo. We'll see what the GI says this week. Josh & I feel so bad for her, we can hear her spitting-up, or she'll just choke randomly. She all of a sudden cries out & is upset. She breaks your heart.

Emma has speech tomorrow, physical therapy on Tuesday. We are set to see her dermatologist on Tuesday regarding the granulation tissue & irritation around the mic-key. Wednesday is the pic cystogram & renal sonogram.

Hope everyone has a good week. Here are some really cute pictures of the girls & also their cousin, Sanders.

(((HUGS)))

Our little cutie pie!!

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Just look at her go, go, go!!!

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The belles of the ball...

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Thursday, October 6, 2005 4:03 PM CDT

It takes both the sun and the rain to make a beautiful rainbow. --Unknown

Hello. I found some good quotes to keep us looking up instead of getting bummed out. Emma saw her pediatrician again today regarding her spitting up & also metabolic studies. She has not spit any actual liquid out since Monday, but she is clearing her throat & coughing strangely since then. We have also heard her doing her 'silent' reflux (prior to her fundo, she mostly refluxed into her mouth or esophagus, and only a few times a day actually spitting up out of her mouth). Dr. Kincaid is hoping that Emma has a stomach virus, & that's what is causing this. She said that with the fundo, even when she does spit-up, it's not enough to cause major problems--so, we are still okay to do the tube feedings at night. The fundo, we're all pretty sure, is still intact; otherwise we'd see a lot more spitting up. If it continues next week, we need to go back to the GI doc. If it does continue, it is more than likely a result of a metabolic dysfunction than a tummy bug.

Dr. Kincaid & I spoke further about metabolic studies. Josh & I feel we've been patient enough following her surgery, as far as weight gain & growth goes, and our doctor(s) agrees. With her developmental delays, failure to thrive, and gi issues (kidney could be related to it as well), she has a lot of symptoms of a metabolic disorder. Dr. K is going to speak to the GI to see what Metabolic docs he likes. Our insurance may be an issue, the Metabolic Center is at Children's in Dallas & most of those docs do not take Cigna. We'll see. I know it will probably be a long wait until we actually see a metabolic doctor, but at least it is a step forward. Of course, none of this has taken Rett Syndrome off the table, growth problems can be part of RS as well. So, I think we're going to set up these metabolic visits & tests, see how they go. Through that time (I'm guessing 2-3 months) we'll see how Emma is doing & if she is still fitting the "Rett picture" before we do the MECP2 test. We're at the point where we just want an answer so we can help Emma as much as possible. Developmentally she is doing so good, making progress each week. Her overall health, though, has not really improved & this is taking the forefront and pushing us to get some answers. At the least, if we knew for sure she has a syndrome, and growth problems is part of that, then we would know that's just how things are going to be, or she may need a supplement, etc. As our GI doctor put it before her surgery, a diagnosis for Em would give him a 'playbook' for her care & prognosis.

As I was typing this, the neurologist's secretary called us back to let us know that the EEG did not show any seizures (yey!) & that the doctor is going to review the results again & Emma's chart to see what we'll do next. We should hear from him in the next few days. I don't think he'll want to do the video EEG, at least I hope he doesn't! Emma is having those "giddy" episodes, only about 1 every 1 to 2 weeks, so I can't imagine anything would be picked up (unless by chance) being in the hospital for the test. Also, if they are indeed seizures, she is not having that many of them, I really do not think they warrant medication. I'd rather keep track of things (neuro is having me keep a record with time, type, etc.) & if they get worse or more frequent, than do the video EEG. I honestly can't imagine how she'd handle a couple of days hooked up to the EEG (I don't know if it's any different than the regular EEG, she hated that!!).

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The soul would have no rainbow if the eyes had no tears. -- Minquass Proverb

I'm getting anxious about next week (pic cystogram). I know Emma will do fine, I'm just nervous about the test results & I do hate her having to go through another yucky test (she will be under anesthesia for this, so she won't be in any pain thankfully). Again, we're trying to look at it as a positive thing--one way or another, it will give us information & an answer on her kidney. The things that the urologist will look for is reflux (from her kidneys), a cyst, mass, etc. on the kidney (less likely), or some other defect, blockage, etc. that is causing her kidney to be enlarged. He'll also get a better idea as to whether or not her kidney(s) were damaged when she had her kidney infection and other UTI's. Given that she has had 3 UTI's & 1 kidney infection in a span of 7 months or so, the urologist feels that something is going on. Most likely, the remedy will be long-term antibiotics (like she was on from Nov thru March) until her kidney 'fixes' itself. If that's the case, she'll get renal sonograms every 6 months until it is no longer enlarged. The possibility of her needing an invasive surgery to repair the kidney is very, very slim, and that is a BIG relief! After the pic cystogram (not sure on the spelling, btw!), she'll get another sonogram. That is all on the 12th, we'll meet back with the urologist on October 20th. He may also be able to give us some insight on metabolic issues.

This is a GREAT quote...I think I'm going to print these out & hang them up! Hope everyone is having a good week. Thank you to all our CB families who sign our guestbook, lend support even with all they are struggling with, and for all their welcome advice & suggestions. THANKS!! And to everyone, we love reading your guestbook entries, so please sign (even just say "hi!") when you come by...it makes our day!! (((HUGS)))

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May I never miss a rainbow or a sunset because I am looking down. --Unknown

Tuesday, October 4, 2005 3:26 PM CDT

**Update**

Hi there. Well, some better news... I heard from Emma's GI doc today, and he said just to watch her for now. If she spits up or throws up again, we are to call him back. Josh & I were so worried about it, and not sure if the GI doc was doing enough. But, I just found some info on a message board with other post-fundo kids vomiting while their fundos were still intact. Apparently, it can happen. So, we'll pray that's the case & this was just a fluke.

Emma is doing FINE today, she's very happy! She tolerated Pedialyte yesterday & last night. So this a.m. she had her normal tube-feed, did great, and has been snacking & eating like normal today...yey! I was so freaked out yesterday that I was scared of what would happen once we started back on her regular diet...phew, big sigh of relief!!

We should get the EEG results tomorrow--Emma's neuro (found out today) was out all last week until tomorrow. I will update if/when we get EEG and/or lab results. I'm not expecting anything major to come from either tests, but you never know.

Emma had PT today, and had a good time. She is enjoying therapy a lot, which is a very good thing. Sarah (PT) is going to have Dr. Kincaid get an Rx for AFO's (ankle foot orthosis) for Emma. She is gaining strength & doing great, but her ankles (all of her joints) are still too flexible (hyperextending, etc.). Her ankles roll too much, so the AFO's will help stablilize them (and prevent her legs from developing improperly). Sarah showed me what they look like, it's a light-weight brace material that will be inserted into Emma's shoes. She'll have to be sized for them, and then ordered. Once our ins company gives authorization for that, we'll do so & it'll take a few weeks to actually get them.

Cute story: Emma was not feeling well yesterday, and in the afternoon she was real fussy. She was so upset as her pedialyte tube-feed was ending. I asked her "Do you want to go in the car and go pick up Madison?" A BIG smile came over her face & she motioned her hands for "car" & said "g-g-g-g" (go). She LOVES her big sis!!!

Take care!

Monday, October 3, 2005 8:43 PM CDT

Hi there. Not too good of a Monday...

This morning, while I was getting Madi's breakfast ready, Emma SPIT-UP (she was getting a tube-feeding, had taken 38 mls). Like her pre-fundo days. I really was dumbfounded by the whole thing, and thought it was just a fluke. I finished getting ready (speech therapy on Monday) & Emma turned her head, wretched & then threw up again. I called her doctor & cancelled with ST.

My pediatrician said it could be that it was more mucus, from her upper esophagus, lungs, etc. But, I'm pretty sure it was from her tummy (first one looked just like her 'old' spit-up, second one was yellow). I put a call into the gi doctor this afternoon...no call-back (argh!), not sure if they had gone for the day or what. But, I really don't think she should be spitting up at all post-fundo. I'll call them again in the a.m. Josh & I discussed it & we both want an x-ray, sonogram, any test to make sure her fundo wrap is still in place. PLEASE pray that it is.

More not-so-good news at the doctor. Emma has lost a little bit of weight. Her pediatrician said Emma just isn't doing as good as we had hoped (growth-wise) & that we'd expect her to be gaining more. She said that with her gi issues, growth, & neuro stuff, she really reads like a child with a metabolic disorder. So, she did a second (may even be third) metabolic panel on Emma. Emma also had her CBC (monthly for anemia check) & also a Carnitine check (low-levels can be common with Rett Sydrome).

Emma's granulation tissue at her mic-key site is slowly coming back, good news is that it is coming back MUCH slower this time. She also has a red ring around it, so Dr. Kincaid (pediatrician) is sending us to a dermatologist. He may have some answers for us. Dr. K said there's a slight possibility Emma is allergic or ultra-sensitive to one of the materials that the mic-key is made of.

We also got a referral for an OT eval through Baylor.

I feel like the wind was let out of our sails today. We're trying to keep our chins up & focus on all the progress Emma is making developmentally. The other thing that has concerned us a lot lately, is Emma's increased hand mannerisms & sensory issues. We're real worried about her fundo & this spitting-up, and it just makes all the other things we've been concerned about come to the forefront as well.

Well, Josh & I are going to watch some T.V. & then off to bed. Madi has Pajama Day at school tomorrow, she is very excited! Emma has PT. Hopefully we will hear from the neuro (EEG results) & the GI. We appreciate all your prayers for our Emma. Thank you!

Thursday, September 29, 2005 6:17 PM CDT

Hi everyone! Emma had her EEG today...it was no fun, but she got through it. Josh was there with us, so that was a big help. She hated the beginning (they have to mark her head with a crayon pencil, then put the leads on with this pasty stuff, all over her head...then they wrap her head in gauze--talk about a sensory nightmare!!). She was verrrry tired though (we kept her up a little late & woke her up at 4:30 am), and once she was all settled with the leads, she did drift off to sleep. The tech said they got a good read (which means the doctor will be able to read the report, etc. the tech could not tell us what the results were). We should hear from the neuro either tomorrow or early next week. It is cool here (YEY!), in the 70's, but the day started in the 50's. It was nice to wear long pants & even a light sweater. We went to lunch with our friends Janice & Samantha, and also took the girls to the park.

Emma had her first private speech therapy session on Monday & that went awesome. The therapist was great, she kept Emma's attention & really worked hard with her. PT went great too, we worked on some new exercises & also crawling stairs. I feel so positive about her private therapies, both therapists have done more with Emma & shown me more than we experienced through the state. I think our county is very populated (Fort Worth) & so the case-loads are too much, even one of our docs said ECI was spread too thin in this area. Well, I am just thankful that our insurance company has approved it & that we have the money to cover the therapy. We are still waiting on our appeal for the Neocate Jr. coverage (argh!).

The granulation tissue appears to be coming back...but this time (so far) it is coming back slower (and not as bad) than last time. I hope that is a good sign. She'll probably have to see the surgeon next week, and maybe after he removes it this time, it will be gone for good. Other than that appointment, we have nothing besided therapy until October 12 (pic cystogram & renal sonogram to get a better idea of what is going on with her enlarged kidney). A nice break!! I'm going to use the time to get ready for Halloween & also do some Christmas shopping.

Emma's tummy has been giving her some problems--she'll be constipated & straining for a couple of days, then she has diarrhea for a day or two. I'm not sure there's much the GI doc can offer, just to deal with the tummy troubles as they arise. The feeding tube (tubie as we now call it) has really been a blessing. It gives us peace of mind to get her all those calories (and it shows!! On our way to 20 lbs!), and if she's sick to run Pedialyte through it. As time goes on, we are also even more thankful Emma had the fundo as well. When she isn't feeling well, or wretches, etc. I just think about how much she was refluxing & aspirating.

Madi has been doing good, still dealing with her own tummy issues. She is still loving school--she had the job of calendar helper today & was very proud of herself! Oh, and she is now going to be a butterfly (Cat seemed too grown-up for Josh & I, lol!!), which she is very, very happy about. And, Emma is going to be a flower. Madi can't wait: she has a party & parade at school, we'll head to the pumpkin patch in a week or so, and of course, trick-or-treating on Halloween. She's also talking to Santa everyday now (it's funny, she speaks to God & Santa & our dog who passed away last year, Bogie all the same way...just looks up to the sky & speaks a little louder!!).

We are all SO happy it is no longer over 100!! We can finally take Emma to the park, for walks, etc. Hope everyone has a great weekend. I'll post the results of Emma's EEG whenever we get them. And, I'll take some new pix of the girls this weekend. Also, I have to get some new pix of our boy, Sam, up here. He is getting BIG!! He's a not-so-miniature schnauzer!!!

Thank you everyone for coming by & checking in on our Emma. We appreciate your continued prayers & support. It's been nice enjoying these past few weeks, seeing Emma grow both physically & developmentally. Her spirit is so amazing, she is so full of life & love. I'm sure you've noticed, our past entries have been positive & upbeat...despite some "little" yucky things going on lately (granulation, viruses, etc.), we are just focusing on the good things. After Emma's ordeal in the hospital & the weeks following, it really put things into perspective for Josh & I. We are just cherishing each moment with both of our girls. Anyway, thank you for sharing in our joys as much as you've helped us through our very rough times.

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Had to share Emma's new love of Blue's Clues. Doodlebops & Hi-5 still rank up there...but she is very much into a Blue's Clue's video (with Steve) with signs. She does the "Blues Clues" sign...so cute!!! She has also started tapping...on me, on her juice, etc. when she wants something. And, she is starting to say what sounds like "go" & "bye." (((HUGS)))

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Sunday, September 25, 2005 12:29 AM CDT

Hello! Another good news report!! I'm enjoying being able to write so many good updates lately.
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Drumroll please...Emma is officially OVER 19 pounds!!! She is 19 lbs, 2 oz!!!
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This is very, very exciting!!! She keeps gaining weight, at a pretty good rate, too. So, we & her doctors are very happy. They said that next we'll probably see her grow height-wise & even start packing on the weight even more significantly. We tease Emma about "fattening" her up!! She eats non-stop, which is great. I never thought I'd feed my child so many snacks & junk-food, but the doctors say they don't care where her calories come from, just to keep them coming. With her food sensitivities, there are not many high-cal, healthy snacks. Anyway, she's gaining weight, so we're all doing a HAPPY DANCE!!
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More AWESOME news: Emma can stand for a couple of seconds ON HER OWN!!!!!!! She is getting stronger & her balance is getting better. She is now crawling with her tummy & pelvis up, her hips not so flexed out. It is GREAT!! She just loves walking everywhere (holding our hands or onto the walker). Part of it is her gaining weight, but I also think being back with Sarah for PT has a lot to do with it too. She gives us great exercises to do, and really makes Em work when we are there.

Josh got our Halloween stuff out of the attic. Madi & I are starting to decorate a little. It is in the 100's here, so it's been hard to get my mind into the holiday season!! We'll have a cold front move in this week, to cool things off (relatively speaking!!!). I can't wait!! Of course, Madi is ALL ready for Halloween...and even Christmas!!! We celebrated Josh's birthday yesterday. It was fun, although we wore the kids out & they both got a little nutty toward the end of the day. Lol!!

Emma had more granulation tissue last week, and we thought she might have another UTI. We are waiting for the culture results. But, she defenitely seems to be feeling better the past 2 days. So, we're hoping she just caught a little bug. The granulation tissue is really getting to us. It is miserable to see Emma going through it, when they put the silver nitrate on. We are now back to no gauze to see if that helps. We've tried several different things & it still shows up on her mic-key site & belly button. If it comes back this week, we need to go to the surgeon. Hopefully he can treat it & that will be the end of that!

Emma starts private speech tomorrow (at the same place she gets PT). I'm really looking forward to it & I think it will help Emma a lot. She is now realizing that being vocal gets attention, and that is a good thing. She has started signing & vocalizing at the same time. YEY!!

She'll have PT too & also her EEG on Thursday. I think that is it for this week. We're supposed to have a garage sale on Friday & Saturday, depending on the weather.

Hope everyone had a fun & restful weekend. Have a great week! xoxo
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More good news--Emma is doing great with the sippy cup too! Unless she is tired, she can drink all by herself!
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Wednesday, September 14, 2005 7:27 PM CDT

Hi everyone! Some more GOOD updates from miss Emma!

She saw the GI doctor yesterday & he is VERY happy with her weight gain (she has not gained anymore since last week's 6 oz increase, but that is okay, she'll probably have little bursts of weight gain here & there). He thinks she looks good & is on her way! YEY! We are to continue what we are doing, trying to give her as much as we can orally. Of course, if she were able to have dairy or soy products, her weight gain would come much faster. Those allergies & her (new) texture issues are right now the biggest hurdles we face with her eating. But, Dr. Brown said she can have all the Happy Meals (chicken nuggets & french fries) she wants! We don't have to go back again until December (WAHOO!!!!). That was an AWESOME visit.

She also had to have more icky granulation tissue removed from her belly button. But, the good news here is that it did not bleed this time. So, the doctor thinks that may be the end of (or almost the end) it. That would be nice. Her mic-key site is red right now, we are hoping that using hydrocortisone & neosporin, some gauze & also stablilzing the button will prevent any more granulation there. Fingers (and toes) crossed!!

I've realized that Emma has learned some new signs, and I think I forgot to mention them here. So, just for the record, let me gush... Emma now knows the signs for:
*more*
*no*
*night-night/bed*
*hello/goodbye*
*done*
*all-gone*
*fish*
*ocean*
*Daddy*
*fan*
*dance*
*boo-boo*
There may even be one or two that I missed here. A few times, she has signed Mommy, cat, and hat. I honestly am learning them too slowly for her!! She has also made up her own gestures for music, Hi-5, eat, go, and dog (Sam). The cutest thing is her head nodding (she shakes for 'no' as well). It is a very excited, almost full-body shake...like "yes, yes, yes!!!" Adorable!!

Her EEG is scheduled for September 29th. She'll need her CBC checked next week (anemia check). But other than that, I am happy to report, she has no appointments (other than therapy) set for the rest of the month. Phew, big sigh of relief from me! That will give us a much-needed break until October. Oh, and she is LOVING PT so much. She has a big smile & is having so much fun. She is also getting worked a lot harder, she is doing lots of ab work on the ball, lots of torso movement, etc. We can pretty much get her to do anything...as long as it involves bubbles!!! She cannot get enough bubbles!!!

Hope everyone is having a good week. (((HUGS)))

Thursday, September 8, 2005 6:05 PM CDT

Hello. Emma had quite a busy week! We have some updates...

On Tuesday, Emma had PT. I am very happy we are back at Baylor. We've already gotten more help & advice, new exercises, etc. Right now, we are focusing on ab & core strengthening. Emma is really enjoying PT this time around, YEY!!! We have found bubbles to be a BIG incentive for her!! Her new shoes are helping her a lot.

Oh--Emma started climbing! She can climb onto the kids' bench in the playroom. We are excited about that, it is wonderful. But...then she wants to climb EVERYTHING!! Bookcases, tables, etc. She has the skill to climb, but not all the strength & balance needed, so she gets adventurous & then falls. Ouch! I'm sure Josh & I will be getting lots more gray hairs now. LOL! It is really funny, though, to see her being a daredevil...and getting into trouble! There's a poem about kids w/ medical problems/special needs & how happy you are when they start exploring, making messes, etc. It's very true--all the mischief Emma has been getting into lately, it is a wonderful thing!!

Emma saw her pediatrician on Tuesday. GREAT NEWS!!! Weight is UP!!! YEY! After last week's disappointing weigh-in, a SIX ounce weight gain was just what we needed to see!! We are VERRRY excited. She does have an umbilical hernia, she probably has had it all along, and it will most likely go away on its own. Her belly button did have more granulation tissue, so Dr. Kincaid had to remove that. Ugh! I can't believe she had it there twice now too. I guess she is prone to it. Thankfully, her mic-key site is looking great.

We saw the neurologist yesterday. The appointment went well, I learned some things about Emma's symptoms that I had not known. For one, he said whenever a child is globally delayed, speech is pretty much always the last area to see progress, and always the area most delayed. Speech requires the most cognitive skills. He is encouraging our use of sign language, saying he thinks it will be good for Emma & will ease her frustations with communication. He said if our new ST (through Baylor) is unsure about it, she can call him. Just Emma's nodding & shaking of her head these past 2 weeks have been a big help with knowing what she wants. He also explained that her irregular body temp (HOT head, cool legs/feet), low body temp, turning blue, head-sweating, etc. are all related to her "brain malfunction." He said it is all normal for her. We know something somewhere with her brain is not working 100%, so it makes sense that her brain is sending mixed signals or the wrong signals to her body regarding temperature. He explained it using some big words that I dare not attempt to spell here...but, I now feel like I understand these odd "symptoms" she has, and they make more sense. As far as seizures go, he is not too concerned with her zoning out/staring episodes. Next time it happens, we have to shake her shoulder & say her name...if she responds, it's fine. If no response, it is a seizure (more than likely) & need to call him. He is concerned about her laughing spells...or what Josh & I call her "versad spells." She looks like she did before her surgery, on versad...eyes half open, laughing, swaying her body backward. It's happened about 5 times in the past month and 1/2. So, we are to diary these events & we'll be repeating the EEG. Depending on what the EEG shows or doesn't show will determine the next step--treatment or a prolonged video monitoring EEG. He said we have not ruled out Rett syndrome, just that since insurance will not cover the test & that her treatment will not change even if it comes back positive, he'd rather wait a few more months. Most Rett girls start showing signs after 18 mos...so we could have a better picture down the road, or more certainty that it is not Rett Syndrome. Josh & I are comfortable with that. Emma is still doing a lot of mid-line things with her hands, and has many physical signs of RS, but she's just so young. We'll go back to the geneticist in a few months, and see what he says as far as the next testing. Patience, patience, patience... The neuro did say that something like 50% of all developmentally delayed kids are never diagnosed. It's not so much getting a diagnosis or name...it's knowing what could be coming down the road that would help us out a bit (especially with regard to Emma's physical health). Not sure when the EEG will be yet.

Today we went to the urologist, but when we were checking in, I realized we did not get the sonogram. Oops! I guess after almost 16 months of doctor visits, it's not bad that this is the first thing I completely forgot about!!! They said it's not a big deal...she is getting the PIC Cystogram in October (the more invasive test to look at her urinary tract), that is the test that will give us the most information. So, instead, we'll do the sonogram that afternoon, and see the urologist again on October 20. At least then, we'll have more solid information & answers on what's going on & what, if anything, we need to do.

This afternoon, Janice & I took the girls out to lunch & then to walk around Central Market. It was really fun, the girls were great. It's been nice for all 4 of us to have these "playdates." Tomorrow, our ECI coordinator comes out to do our 6 month review. We will continue with ECI, so Emma is enrolled in the program which will help us once she is school-age. Speech & physical therapy will come out once a month since we'll be getting both privately and then OT will come every 2 weeks for now. Until November, Emma has a lot of doctor's appointments & some procedures, I felt she'd be overwhelmed by too much else. So, this will work out better. I'm a huge advocate for aggressive therapy, but I also don't want her getting burnt out. We'll see where things are in November, we may need to step up OT to 1 x week again.

Madi is doing good, loving school & learning SO much!! She is an ace at letters, their sounds, etc. Her school is collecting change for the Red Cross (hurrican relief), and she's been so sweet, going around the house finding coins...and even taking money out of her piggy bank!!

Speaking of compassion, I have to brag about Josh. This past weekend, he went to the Convention Center in Dallas (where I think he said 7000 evacuees are) to help the federal & local law enforcement be able to move & expand their command center. He and other volunteers (engineers mostly) built a tower (sorta like a cell tower) on top of the convention center. He did a lot of technical stuff, a lot I don't understand (lol!), but basically he increased their lines of communication, improved their signal range, and therefore allow them to help everyone else out a lot more. He was there from Saturday afternoon until almost midnight. Thank you babe!! He may head to New Orleans sometime in the next few weeks to help out as well. We have some neighbors who have family members from there, who lost everything, moving into their house. My sister's (Denise) company has donated blood, supplies, and is going to (if they haven't already) to "adopt" a family. It's been really refreshing to see how kind so many people here in Texas have been to those who are in need following the hurricane. I may be a Yankee at heart, but I have to say, Texas is a pretty great place. If only it wasn't SOOO hot...lol!!

Thanks for coming by & checking on Emma. We can never say enough how much your guestbook entries mean to us. (((HUGS)))

Friday, September 2, 2005 4:28 PM CDT

Hi everyone. Hope everyone has had a good week. I've been watching all that is going on in the Gulf Coast, and it is heartbreaking. It certainly makes the things we go through on a daily basis seem like very, very small problems. We are going to deliver some of Emma's baby clothes & some other supplies to a local shelter this weekend. The Dallas-Fort Worth area is taking in many refugess, we are happy to help so close to home. I will include the link for the shelter this weekend.

Well, Emma did not have her neurology appointment today, the doctor had a dental emergency. So, we go on Wednesday instead. Emma will also see the urologist next week. She did get to the surgeon yesterday & he removed the granulation tissue. It was a horrible experience, she was shaking her head "no" back & forth. We hope this will be it. We're going to put some creams on it & keep the mic-key button taped down, to stabilize it, this should help.

Emma is doing good. She got some new shoes this week. Her PT had suggested flexible sole, hi-tops. They have been great--giving her LOTS of support. She LOVES them. We went out with Janice & Samantha, the girls loved shoe-shopping together!! I've included some pictures below of the girls playing, which includes the cool playroom. The girls LOVE it. It is very therapy-friendly now for Emma. Emma is sitting here with me now, listening to the Doodlebops singing. She LOVES this show. She was dancing & "singing" to it this morning. I think all the movement & the beats of the songs keep her stimulated & interested. In the morning, Hi-5 comes on & then the Doodlebops--Emma is VERY happy at that line-up!!! It makes her tube-feedings much easier on her.

Very exciting news: Emma has learned to nod & shake her head this week!! Earlier in the week, she started shaking her head for 'no' & also for eskimo kisses. Today, she started nodding for 'yes.' HOW COOL!! Hopefully little Em will sleep good tonight. She has been averaging about 6-7 hours of sleep per DAY, avoiding most naps & not sleeping well at night. This is so important for her growth.

Well, we are going to go organize our donation items. We are so grateful for all we have, mainly our wonderful family & friends. Thank you again for everything.

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Tuesday, August 30, 2005 4:12 PM CDT

Woah--wrote a novel again!! I hated to put a new entry in & move those pictures...if you missed the last entry, go to journal history for some cute pix of Emma!!!

Sort of a good news, bad news update. Not anything horrible, but things are defenitely not where we wanted or expected them to be.

Emma had her PT & ST evaluations today. We were lucky, the ST made arrangements to move up the eval (was set for October!) to today. So, we only had to make one trip out there, and even got to the pediatrician (who is 5 mins from the therapy place). Big $$ saver, with gas being ridiculous and us having 2 trips to Dallas this week!!

Emma's PT appt went well, it was good to be back at Baylor with Sarah. I feel like she'll give us the tools we need to help Emma at home. She is still pretty significantly weak in her trunk, and not as strong as she should be elsewhere. She has a slight hump in her upper-back from sitting slumped, she also still sits a lot in the W position, and holds her arms in an odd posture. Her gait is wide & unsteady, her ankles turn out (roll) & are not strong. The PT said she'll probably need AFO's (don't even know exactly what they stand for) that will help her keep her balance when she starts walking. They are too heavy for her to have now, but I'm going out tomorrow to get her some high-tops which may help a little. I was confused for a while as to why Emma can crawl & cruise, but cannot sit in a grocery cart, restaurant high-chair, etc. She even slumps down in her stroller. Sarah said that with cruising, she can use her arms & legs a lot to hold her up, etc. With sitting, it is pretty much all her torso. Makes sense to me now. So, we are to do assisted push-ups, and also sit her on a chair while someone supports her, and someone else blow bubbles, have her reach up, down, and to the sides to catch the bubbles. We need to strengthen her abs before she'll be able to walk on her own.

I really like the ST named Christine. I was a little down to hear where Emma is: 7-8 months expressive language & 11-12 months (emerging skills) for receptive. I thought Emma was further along. Not a huge deal, it's not like kids her age are quoting Shakespeare...lol! She is also VERY orally defensive and her oral motor skills are delayed (hard for Christine to know exactly what things are like, Emma won't let anyone in her mouth!!). So, we'll start ST in about 2 weeks (pending the authorization from Cigna), Emma will get it once a week for now.

The reviews & evaluations are always a little difficult. Thankfully, Emma does make progress & she is doing amazing things, even surprising the doctors at how well she is doing. At the same time, you are still hearing things about your child that you never anticipated. And, with Emma, she's just Emma to me. It doesn't dawn on me until we are with kids her age (or younger) that she is delayed.

The appt with the pediatrician went okay. She has another upper respiratory infection. Thankfully, it is not in her ears or lungs. She's gots lots of green & yellow junk in her nose, hopefully with lots of saline & steam, we can kick it all out.

Josh & I spoke just before I went into the doctor's office, we were guessing how much Emma has gained. We thought for sure several ounces, and that she probably grew some. Well, she is still at 18 lbs, 8 oz and 28 inches long (I think last time they measured her, it was done incorrectly...they had her as 28 3/4, but they did it twice today, and she was 28 for sure--she did not shrink, that we know!!). So, no growth in 2 weeks. We are bummed...but the doctor said it could be from the URI or just that Emma will need a little bit longer with everything to hit the growth spurt we are waiting for.

Also, we think Emma is having more seizures. We are not sure. Today at PT, she zoned out for 30 seconds, the PT & I both called her name, clapped hands, got in front of her--nothing. Then she blinked twice & was back with us, smiling. She's done that more often lately, as well as some other odd things. We see the neuro on Friday, so we'll see what he says.

Last bit of icky news--Emma has bad granulation tissue around her mic-key again. It's worse this time around, and appeared all of sudden on Sunday. So, she'll go on Thursday to the surgeon to have him take it off. I hope this is it or that we can find something that will keep it away for good this time.

Madison is doing good, her labs were all normal. YEY! She continues to amaze me with all she learns in school. Her & I are going on a mommy/daughter date tonight. That should be fun. Josh put together some cool playroom furniture (will take pix) this weekend, so the room looks AWESOME!!!

Wish us luck for the rest of the week. I am dreading Thursday, please pray that this is the last painful procedure Emma will have to have for a LONG while. This past week was the first time in a long that she wasn't poked, etc. I don't expect anything major to come from Friday's appt with neuro. I think we are waiting a while longer for the MECP2 test (Rett).

Have a good week!!! Thank you everyone for all the prayers & support. (((HUGS)))

Friday, August 26, 2005 4:29 PM CDT

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Hi there!

Well, we had a pretty good week. Emma is wretching a lot worse with her tube feeds. We are not sure if it is just her sensations are back post-op & so that's why it's worse now a few weeks post-op. It could be nausea from feeling her tummy fill-up, the button moving, swallowing air, etc. It could also be a stomach bug. We're not sure. Today I started giving her a graham cracker before her tube feeds, this seemed to help. Her tummy has not dealt with just liquid formula in 10 months. She is doing GREAT when eating meals. It's a lot easier to give her the 950 calories per day when we combine tube & oral feeds. She is putting on the ounces for sure!!!

Emma has decided that she only needs 9-10 hours of sleep per day. One night she went to bed close to midnight. She just has a lot of energy, if you try to put her down to sleep, she is a mess. If you let her stay up playing, she's happy as can be...even if it's 11 at night!! Josh & I are tired...how is she not?? She is taking a nap right now, which is a rarity!! Hopefully we can get a good sleep cycle going for her, I know that is VERY important for her growth & development.

Other than that, things really are going great. I think after all we have been through, even these little "bumps" in the road seem like nothing now! We are just loving seeing Emma crawling around, cruising, and especially getting into trouble! She is quickly becoming a toddler & giving us lots of attitude. We LOVE it! She cracks us all up, she is very funny & so expressive. The latest thing she is doing is making up her own sign language. So, she looks at you, her hands going, and waits for your response...then looks at me like she cannot believe I don't understand her! This combined with Madison's new passion for Spanish (she gets it twice a week in Pre-K!!! She knows all her colors & the other night says to me, in perfect Spanish, "Como se llama?"). Josh & I are starting to think we live in a foreign country with our girls!!!

Speaking of Madi, she saw Dr. Brown (Emma's GI doctor) on Tuesday. Emma came with us & I think she thought it was cool that (for once!) she was NOT getting poked & prodded. Madi did well, we are still trying to resolve her constipation. So far, so good. She is to stay on her Miralax & she now has a potty schedule. She was very brave during her exam & blood draw. Hopefully her tummy can get into a healthy pattern & tummy aches will go away.

Emma had a playdate yesterday with her friend Samantha. Janice & I had a lot of fun too! They received GREAT news last week as well--no chemo for Samantha! The neuroblastoma was Stage 1, so now that it is removed, they will monitor her very closely (scans & bone marrow biopsies every 3 months). It was great to see both the girls playing!

Well, miss Emma is awake (20 minute nap!!). I wish she would tell me where she is getting all of her energy!!!! Thanks again everyone for coming by. Please sign the guestbook, we love to hear from y'all! Have a good weekend. Josh is headed to the Cowboys game tomorrow night--so he is thrilled! Take care!

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Saturday, August 20, 2005 5:55 PM CDT

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Good news update!!!

Sorry this is overdue, but we've been busy...having fun mostly!!

Emma had her video swallow on Friday. Things look much better. She penetrated a little bit, but there was a big improvement from 3 months ago. We think that now that she has had ZERO reflux for 4 weeks, things are healing & strengthening, and her sensitivity is getting to where it should be. YEY!! We are able to slowly start giving her some foods orally--mostly nectar-thick drinks and mushy food in tiny bites. Her oral motor skills are delayed (which we knew, and really isn't a surprise, she has not had much time really eating a variety of foods/chewing). The speech therapist who was there for the test gave us 2 flexi-cups & a maroon spoon--both will help Emma to close her mouth when she drinks or eats. She's doing pretty good with the cup.

Her urine dipstick was negative, we are awaiting the culture results...but (WOO HOO!) luckily, our doctor removed the PICC line yesterday too. It is SOOO nice to have that gone. Emma seems very happy to move her arm again. Happy dance!!

She also GAINED 7 ounces!! So we are on our way UP, UP, UP!!! It was so nice getting all that good news. She is still anemic, so she is now on iron (along with her vitamin w/ iron) & that should straighten that out as well.

Josh & I took her to IKEA (just opened) yesterday, she had some swedish meatballs (LOVED them!). And, today, Aunt Denise brought her over a happy meal. She gives us the biggest smile when she is eating! She can have about 1 meal per day & 2 small snacks by mouth, the rest via gtube. But, slowly but surely, she should be able to eat more & more!!!

I'll take some pix of Emma enjoying some food this week. Hope everyone is having a great weekend too! Thanks for all your continued support.

Wednesday, August 17, 2005 9:57 PM CDT

Hi everyone. I wanted to put some pictures up to make you all SMILE! How cute are my girls? Emma is signing again, she had almost stopped since surgery...but she is back & even made up her OWN sign for her new favorite show, Hi-5!! And her new thing is for us to kiss & then she just cracks up hysterically!! We are hoping the PICC line is out by this weekend (in time for our Happy Meal party...lol!! Fingers crossed!!!).

Check out this hair! Punk rocker!!
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Too funny, miss Emma styling her hair!

Emma let me put her hair up today! She usually freaks out, so I never bother...but she liked it today. She LOVED looking in the mirror at her hair-do.

Figuring out the DVD player...

How grown-up does our Madi look??? All set for PRE-K!!
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Showing off her Tinkerbell backpack, so cool!

(((HUGS)))

Monday, August 15, 2005 9:26 PM CDT

It's Monday!! Emma had a miserable evening. The home nurse came for her antibiotic infusion & she also needed her PICC line dressing changed. As the nurse was removing the dressing bandage, it ripped out two (of the 4) stitches around the PICC line. It was terrible. Emma was screaming & hurting. Of course she was bleeding where the stitches were (unintentionally) yanked out. The nurse put on new dressing bandage & I noticed the PICC line looked crooked. It was, because now the stitches were not holding it in exact position. SO...the nurse had to take off that dressing & start all over again. ARGH!

Poor Emma was just a mess, and after she calmed down she was wretching a bunch. Now, we have to keep a closer watch on the PICC line, because it is now at a greater risk of being infected. Tomorrow should be her last infusion & then on Thursday the pediatrician will draw more blood & repeat her urine culture. I pray they can then remove the PICC line. She'll like not having to wear the splint, and it will be a relief not worrying about another infection for Emma.

Emma's sleep troubles seem to be back. I've ended up spending 1/2 of the past 2 nights sleeping in her room (thank goodness we got a comfy recliner for her room post-op!!). I'm hoping it was just some weird thing & that we are not back to how things were for Emma a few months ago.

ECI should be coming out tomorrow to review her IFSP (basically therapy plan). I'm not sure if they re-evaluate her as well at this point. Thursday she sees the pediatrician & video swallow on Friday (so hopefully HAPPY MEALS this weekend!! LOL!!). We are REALLY hoping we can reintroduce solids. We had to go back down to 4-4 1/2 ounce feedings, 5 oz was making her wretch & be uncomfortable. I don't know how she would handle some solids, but I do know a french fry would make her happy.

Emma's urologist's nurse called today. She will have a pic cystogram (not sure about spelling!) in September. It is similar to the VCUG tests she's had in the past, but this is a bit more invasive. She will be asleep for it, and the urologist will do it himself. He can see her urinary tract better & he'll control the flow of the dye. This will give us (hopefully) some answers as to why Emma's kidney is enlarged. The other test only ruled out kidney/bladder reflux, this one could show an obstruction or other defect, etc.

Hope everyone has a GREAT week. Thanks for checking in on Emma!!

Friday, August 12, 2005 8:12 PM CDT

Quick note--I realized in all my rambling on these past 2 days, I've neglected to update on Emma's friend, Samantha. She had her surgery on Tuesday, and she is recovering quite well. They do not yet know if she will need chemo & exactly what form of cancer, etc. they are dealing with. Samantha's mom says she is doing well, acting like her usual self. She is not eating too well & has thrown up a few times when she does eat, they are unsure why at this point. So, hope for some hungry vibes for Samantha & that her tummy will feel better.

Here is Samantha's page, you can stay updated on her & leave the Gable family messages. Thanks! Take care.

www.carepages.com/ServeCarePage?cpn=SamanthaGable

Friday, August 12, 2005 2:50 PM CDT

***Okay, wrote a novel here!!! Some updates, some journaling for me (free therapy, lol!), and a sweet song and pictures too. No need to read all my long-winded entry, but for sure check out the lyrics & pictures at the bottom.***

Another update...Emma had her 15 month well visit today. She is doing okay with all things considered. She is no longer "on the charts" for weight, and barely at 3% for height. But, with all she has been through these past few weeks, no one was really surprised. The hope is that all of these icky infections will leave her alone, and we can just keep up her calories, and she will gain weight & grow. They'll continue to monitor her growth, and if after 2 months of her being "healthy" and still not making it on the charts, we'll see an endocrinologist.

The PICC line will remain in through next week, and she will continue with the antibiotic infusions for 5 more days. They don't want to risk this stuff coming back. Her urologist may do a special study on her (long name), it's like the cystogram test she had, but for this one she'll be alseep & the urologist will do it, controlling the amount of dye that is put in. He can get a much better view of her urinary tract with this test. They'll probably try & do it next week, while she still has the PICC line going. We'll repeat a urinalysis & bloodwork, and see the pediatrician again on Thursday. Friday she has the video swallow.

Emma will (again) begin private PT, it's a bit more intensive than what we have now with ECI. She'll also start private speech therapy too. As much as I realize there is something wrong with Emma, I also thought she'd be progressing more. I expressed my concerns with the doctor, and our desire to see about more tests, and finding "the" answer.

She said that we should probably return back to the geneticist in a few months. They are not as sure as they were before about Rett Syndrome, she is doing less of the hand motions, so that test may be on hold again. They do still feel that all of her physical health issues & developmental delays are related in some way. An answer would help us know how best to treat her.

My doctor also told me that Emma will not be "normal" for a long time, if ever. By normal, she clarified, she meant that Emma will not do the things Madison was doing at a certain age, etc. Emma will need therapy & medical attention indefenitely. As weird as it may sound, I needed to hear that from a doctor. Until this point, they've played around with abstract terminology, very broad language. Part of me knew this was going to be a long road, and that odds are Emma is facing something that will affect her, her whole life. But, another part of me looks at Emma who has made so much progress, and "looks" fine. I kept thinking in a few months, we'd be through all this. I nearly cried when the doctor told me that, but again, I needed to hear it & let that sink in.

I can continue doing what we've been doing, therapy, etc. and keep loving Emma for the amazing little girl she is. I need to remain patient, and not wonder when or if Emma will do the things that other kids do. This all may sound weird to some, but when several doctors see your child, and predict that yes, she has something wrong with her, that her brain does not function properly, etc. you are left fairly dumbfounded. It is nothing you plan for, nothing you could ever prepare yourself for. And, when you do not have a diagnosis (i.e. a genetic syndrome, etc.) then you're kind of in this gray area, where you don't know what the future holds, and you have no idea what to expect.

A lot of Emma's care could depend on a diagnosis. Her GI doctor cannot say how long she'll need a feeding tube, she may always need one or she may need it for just 12 months. Her urologist is unsure why her kidney is enlarged and why she gets UTI's, a diagnosis could tell them that she lacks an enzyme or has too much of something in her system, etc. It could explain her growth problems, her developmental delays, etc. I hope at some point before her 2nd birthday, we do have an answer, and we can have the tools in place to give Emma all that she needs.

PHEW! That was a novel & a half. What else is new with me? LOL! If you are still reading this at this point, THANK YOU!! And, I want to share a beautiful song with you. I am not a big Celine Dion fan, but Josh & I have grown to love the cd, Miracle by her. The PICU nurses started playing it for Emma, and it helped calm her down a lot. So, it was basically our soundtrack in the PICU, from when Emma was looking really bad & we were terrified, to the joy of seeing her perking up, move her head, and coming back to us. I picked it up at the store the other day, and the first time I played it for Emma, I was all teary-eyed. I don't think I could ever put into words how we felt during those dark hours of doctors & nurses looking too concerned, and hearing scary words & having tests done to your baby. Seeing her with leads & tubes coming from her, seeing no expression, looking in her eyes & not seeing her there. It was the most difficult thing, and I don't know how parents whose children are in comas, or in the ICU for weeks and months get by. I am forever grateful that Emma recovered in record time, and that I do have my Little Tough back.

This song is beautiful & is sweet for any child, but I think its lyrics hold true especially for special needs kids and their parents.

Miracle - Celine Dion

you're my life's one miracle
everything I've done that's good
and you break my heart with tenderness
and I confess it's true
I never knew a love like this 'til you

you're the reason I was born
now I finally know for sure
and I'm overwhelmed with happiness
so blessed to hold you close
the one that I love most
though the future has so much for you in store
who could ever love you more?

the nearest thing to heaven
you're my angel from above
only God creates such perfect love

when you smile at me, I cry
and to save your life I'd die
with a romance that is pure in heart
you are my dearest part
whatever it requires
I live for your desires
forget my own, your needs will come before
who could ever love you more?

there is nothing you could ever do
to make me stop loving you
and every breath I take
is always for your sake
you sleep inside my dreams and know for sure
who could ever love you more?

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Thank you again to all our family, friends, CB friends, and everyone else who comes by to check up on Emma. Thank you for signing the guestbook, and keeping her in your thoughts.

Thursday, August 11, 2005 2:50 PM CDT

We just got back from Emma's doctors' appointments. She is wiped out & napping. The appointments went pretty well.

GI: We can increase Emma's feedings to 5 oz over an hour every 3 hours, and 10-12 oz over 10 hours at night. We can alter the night feedings based on how many ounces she consumes during the day. She needs about 950 calories per day, about 32 ounces of formula for her. We can't make the feedings quicker, they don't think she will tolerate it & it could lead to "dumping syndrome" where tube-fed kids sweat profusely & have diarrhea (last, last thing she needs!!). He said ultimately for Emma, probably the quickest we can do a feeding is 30 minutes, and probably never more than 6 ounces. We repeat her video swallow next Friday, and this time they will test several solids as well. Hopefully, with her reflux gone, her aspirating will improve. We would like to at least feed her one meal orally each day. We know she'd LOVE some chicken and french fries. The GI said that's great...he'd love for her to eat a happy meal!! He just wants calories in her to bulk her up!!! She weighed 17 lbs, 11 oz at this visit, and was 28 inches long. So, that is less than she was at 12 mos for weight, and only 1 inch taller in height in 3 months. We are hoping with the infection leaving, she'll face no more hurdles & we can just keep feeding her & letting her get chubby! We follow-up with him again in 4 weeks.

Surgeon: Incisions look good (I still can't get over how tiny they are...she technically only has 3, the 4th is where her mic-key is and the 5th one was pretty much in her belly button, so you can't see it), the only problem was that she had some granulation (that is when the body attempts to close up an "open wound" i.e. her stoma, and creates extra tissue around the site). So, he had to do put silver nitrate & hydrogen chloride on it to remove it. Really icky! Hopefully that will not happen again. So, we don't have to go back to the surgeon unless it does. YEY!

We have her 15 month well visit tomorrow. They won't be able to give Emma her shots because of everything else going on. But, I need to talk to her ped about starting private PT again (with Sarah at Baylor) and also private speech therapy. We also have some more questions about her growth and her gross motor skills.

Hope everyone is having a good week. Thanks again for checking in on Emma. HUGS!!!

Tuesday, August 9, 2005 12:39 AM CDT

Hi there! Yes, I played with Emma's page a bit today & changed it. I wanted to add the quilt that Lisa made & her new banner from Helen. Aren't they both awesome??

Emma is doing a little better. We drew blood last night & she had a urine culture done as well. Hopefully all the numbers will look good & show us the bug is being kicked out by the antibiotics. She did great during her PICC line dressing change yesterday. The redness around her mic-key is going away, the rx cream is helping TONS!

Her croup did turn into broncholiotis (sp?), and she started to rattle a lot in her chest yesterday. We are conitnuing with the twice a day breathing treaments, they are helping although she HATES them!! We go back tomorrow if she is still coughing. We have the surgeon & GI on Thursday & Emma's 15-month well visit on Friday. She'll start back up with her therapies next week too. Busy, busy girl!!

So, all in all, I think Emma is now on her way to being fully recovered from all of this. It's been hard to appreciate her successful surgery with all that's gone on. But, her fundo has been great--she has had very little side effects from it & I'm so thankful we did it. It's a relief not worrying that she is refluxing & aspirating (especially while she sleeps!). And, the mic-key is giving us peace of mind as well. It's nice knowing how much she is consuming & getting enough calories to her, and we know she's not choking on her meds, etc.

Madison started school today (I'll post pix tomorrow) and she LOVED it. She was nervous getting there (her shoe was dirty, her leg hurt, she was too tired, on & on...lol!!), and had asked for me to stay a while. Well, as I guessed would happen, we get there & I barely got a hug goodbye! She had so much fun...she even has tumbling on Mondays, and today & Thursday she has spanish lessons! She is loving it. I'm so happy. I miss her being here during the day. I am now able to get a lot more done while Emma naps.

Wish us luck with the insurance company...I know ultimately we will win & get coverage for the formula (for those of you who do not know, Neocate & Neocate Jr. is insanely expensive--$40 a can or so plus shipping...). There is no alternative treatment for her, she cannot have milk or soy!! They really are absurd and I still can't beleve I have to waste what little free time I have arguing with them. Oh, well!! I figure, after all this, I'll either be able to become a nurse, lawyer, therapist, or politician. HAHA!!!

****PLEASE KEEP SAMANTHA IN YOUR THOUGHTS****
Emma's friend Samantha had surgery to remove her mass today. She should be out by now & we are waiting to hear how things went. They won't know until after surgery whether she will need chemo. Hopefully things will go great and she'll be home by the weekend! Keeping you guys in our thoughts & prayers. We love you, Samantha!!! (((HUGS)))

Friday, August 5, 2005 11:42 PM CDT

Emma had her PICC line placed today, and it's much better than the one she had in the hospital (that one was near her armpit & made it hard to pick her up, this one is in the crook of her elbow, she has to wear a splint). The splint she has to wear is really soft & has Winnie the Pooh & butterflies on it, she likes it actually! It went great, after the nurse came tonight & we gave her the medicine, I was especially glad she has the PICC line!!

She defenitely has the croup (yuck!). So, after we left the hospital (picc line), we went to the pediatrician & they did another breathing treament. We go again in the morning. I'm glad they are keeping on the ball with this...granted her pulse ox numbers are not horrible, but with all her body is fighting & her aspirating, the doctor wants to be extra cautious & avoid pneumonia.

She is so amazing. Still feeling yucky, coughing, fever again tonight, and pretyt out of it all day...but still so sweet, giving some smiles & kisses. How does she do it??????

Thank you everyone for keeping our Emma in your thoughts & prayers. It means so much. Thank you too for the guestbook entries, phone calls, gifts, cards, visits, and SUPPORT. One day, we hope we'll be able to properly thank you all.

Last update...medical supply place supposedly has their act together & will get all our supplies (the right ones) starting next week. Our insurance company, however, has decided to NOT cover Emma's Neocate. I had to laugh at the letter, them stating that it did not seem medically necessary for Emma and their suggestion that we speak to our doctor about alternative treatments. Hmmm... So, next week we'll battle on against them. My phone rang NON-STOP this past week...it really was a zoo here. We practically lived at the pediatrician's office. I am so looking forward to the weekend. We are going to try & take Emma out for a bit...we are trying to keep her away from anymore germs, so that may be a challenge. It would be nice for her to go somewhere other than a doctor's office or hospital.

Hope everyone has a great weekend. THANKS AGAIN!!!!

Friday, August 5, 2005 0:03 AM CDT

Up late again (in bed with the laptop, comfy!!)...I have to disconnect the gtube soon, Emma can't have her full overnight feeds because of the anesthesia tomorrow. She can have some pedialyte in the a.m. She had an icky evening. We went to the pediatrician, her breathing is still raspy & her cough is wetter & thicker...her pulse ox was 97 & her white blood cell count has dropped more than half since Monday. So, the doc did a breathing treatment to give her a good night's sleep & to hopefully help knock out whatever is starting. She also had her gentamcyin (sp?) shot too. I really just want my baby to be well...her body is fighting so much now. I can't even think about it too much, or I probably would not be able to keep rolling along here. She was so sad today, unanimated & sleepy most of the day.

Because of the upper resp infection, they may not be able to do the picc line. We'll see what the anesthesiologist says. We hope they can still do it, it will make this all a lot easier on little Em's body. Please keep Emma in your thoughts, and hope she is feeling better and the picc line can be placed. We are still set to be at Medical City at 9 am, picc line placement around 11:00 am, and we should be home by late afternoon.

Please especially keep Samantha & her family in your thoughts tomorrow as well. They meet with the surgeon, so I'm sure tomorrow will be a long & tiresome day for them all. Thank you Janice for all your continued support & advice these past few days, even with ALL you have on your plate. The Dr. Smith's is great too--thank you!!!!

Hope everyone has a good weekend.

Thursday, August 4, 2005 1:59 PM CDT

Hi. Quick update on Emma. She is a lot more congested today, coughing, sneezing, & some wheezing. She's sleeping lots & looks so sad. The doctors are hoping she caught the croup bug that Madi had a few days ago, and that this is NOT the pseudomonas (bug in her urine) entering her respiratory tract. They are going to monitor it.

The pediatrician & urologist have spoken, and the ped conferred with an infectious disease specialist. They feel that Emma will need to be on antibiotics for at least 10 days, maybe more. She will need blood drawn every few days to monitor level of drug in her system & see how her kidneys are functioning. Because of this, she will have a PICC line placed (again) tomorrow. We go back to Medical City at 9 am, and at 11 am they will place the picc line. We should be home by the evening.

Emma will then get IV antibiotics twice a day and hopefully we can knock this bug out FOR GOOD. Her tummy (so far) is doing better today...no diarrhea, so that is one very positive thing. I just want all of this do be done with, so Emma can just focus on getting all her feedings in and growing.

Update on Madi--she starts school on Monday! She is SOOO excited. It is a 5-day, full-day program, so she can have lots of fun & learn, and I don't have to worry about what to do when Em has to see a doctor, therapy, or these home health visits, etc. It will be GREAT for our social butterfly, Madison!!

Please keep Emma in your thoughts, especially during her PICC line placement. Thank you.

Thursday, August 4, 2005 0:30 AM CDT

Well, our little Emma needs some more help. We were back at the pediatrician today because her diarrhea & fever continues. Later on we received a call, her urine culture was back & showed the bacteria, pseudomonas growing. This is what she had in the hospital as well. The only way to treat it is with IV or injected antibiotics. She received her first injection of gentamicin tonight. A home health nurse will come starting tomorrow to give the injections (saving us trips to the doctor's office), she will get them for 7 days. On Saturday, she will need a urine culture to make sure the bacteria are dying off & some bloodwork to make sure the gentamicin is not affecting her kidneys--this medicine can damage kidneys).

This strain of bacteria is pretty nasty, is probably the cause of her neck/back problems in the hospital & also most likely causing her diarrhea (they've collected some samples, and we now have to collect 3 more at home). I feel so bad for little Emma...she went through so much in the hospital and now at home, she'll be getting daily shots & more testing done.

Also, she is starting to sound raspy, so we have to watch because this same nasty germ can pretty much travel anywhere in the body & wreak havoc. So, it could cause pneumonia or a URI, etc. Also, it may be causing her a mean diaper rash & now some redness at her stoma (where the mic-key is) site. They gave her nystatin for that.

Please keep Emma in your thoughts & that this bug goes away quickly & that her kidneys do fine through all this. I am caling her urologist tomorrow to see if there is anything else we need to do.

ALSO--here is Emma's friend Samantha's website (she'll be getting a CB one soon): www.babiesonline.com/babies/s/samanthalauren
They will be home for a few more days, they see the surgeon on Friday & Samantha will need some more scans before surgery (which will be next week probably). They will remove the neuroblastoma, and after surgery they will know whether she will need chemo. Please keep Emma's best pal in your thoughts & prayers as well, her family too. THANK YOU!

Tuesday, August 2, 2005 3:52 PM CDT

Hi everyone. I'm posting today to ask for your prayers & thoughts to be with our good friends, the Gable family.

Please keep Janice, Chris, Lance, and Samantha in your prayers. After a CT scan today, they found out Samantha has an encapsulated (sp?) mass on the left side behind her heart & lung. They think it is probably a neuroblastoma & are running bloodwork to determine what type of cancer. They will see an oncologist tomorrow & be admitted thereafter. Please pray for Samantha, her family, and the doctors & nurses who will be treating and taking care of her.

Janice is one of my best friends & has been such a support system for me. We take Madison & Lance out to the movies every couple of weeks. Samantha is 1 1/2 months younger than Emma, and the two of them are buds. They are an amazing family.

Janice, Chris, Lance, & Samantha: We love you guys & want you to know we are here for you all. Keeping you in our thoughts & prayers always. Take care. (((HUGS)))

Tuesday, August 2, 2005 0:18 AM CDT

Hi. Emma had a rough day. Her fever spiked to 102.6 on Sunday & this a.m. it was 101.9. She's fussy & sleeping a lot more. The pediatrician ran a bunch of tests--blood & urine work-ups. Poor baby had to be cathetered for the urine sample & stuck on each arm for bloodwork (her first vein gave out before they were even able to fill one vial). I felt horrible that she was having to go through all this again...so soon after ALL she went through in the hospital. She's resting good tonight. Her ears & all look fine...so the docs think maybe a UTI. This would actually be a good thing (sort of...bad for her kidney, good in that it's not something worse). If things don't show a UTI, and she still is not well come Thursday they may admit her to do more testing (sonogram to look for "pockets" of infection, etc.).

I hope this is just a little viral thing that will pass in no time. She's been through too much.

Madi is feeling better...just a bit weepy that Mommy is so busy now with things. We think we found a school for her, Josh will check it out tomorrow. She will be THRILLED!!

I'm aggravated with our home health situation. They only sent us the pump for Emma's feeds & the bags. No medical supplies that Emma needs (like Tegaderm for her dressing and other VERY necessary stuff). It's frustrating...1/2 my day is talking to people, convincing them what my daughter needs. We're even still waiting to hear if they'll pay for the Neocate Jr. (formula) again. ARGH!!! Thankfully, I have the girls' hugs & smiles to make everything easier.

Oh--did I mention Emma is kissing now?? She must give me at least 20 kisses a day!!! She is so sweet. Every day she is doing something adorable & amazing. She understands so much. Em is getting a bit frustrated at her lack of speech. I'm trying to teach her signs as quickly as I can learn them, but she still gets upset at times because she can't just say what she wants. She is, we swear, saying some words here & there...like "Josh." Sure, could be us going nuts, but it really sounds like it!! She attempts to make animal sounds too. Here are some cute pix of Little Tough in the hospital. Take care.

Emma about to get the CT scan...holding the kitty that Henry from Fellowship brought her. She held onto it for dear life!!

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Starting to feel better...fell asleep with Teletubby video in her hands!!

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Finally feeling good! Kissing her picture of Madison!! How sweet is that???

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Going home--sleeping peacefully in clothes and only connected to her mic-key!!

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Saturday, July 30, 2005 8:59 PM CDT

Hi there.

Yes, we are home! We made it home in time for dinner on Wednesday. What a relief!!! I've been trying to make up for lost sleep, and mostly, Josh & I are just digesting all that we went through. The day Emma was born, that moment she came out, blue & limp, people working on her, all the things you don't plan for...that had been the scariest moment of my life. The Friday after Emma's surgery was the scariest day of my life. I was concerned about her fever, and that my baby just wasn't "with us." She barely opened her eyes, and had a void stare when she did. She couldn't move her neck or body...screamed if I attempted to hold her. I was petrified, not knowing what was going on & what would happen to her. Then when the doctors kept coming, and their & the nurses' faces kept looking more grim...my heart was sinking. She went through so much that day...chest & abdominal x-rays (which were very painful to her...the moving), a PICC line placement, an upper GI, a neck x-ray (both excrutiatingly painful for her) then being moved to the PICU, all the talk of a transfusion... The next day she had another chest x-ray & a CT scan. Plus, she was having more blood drawn than I thought possible (I never thought I'd be thankful for a PICC line). And they were pumping her with so many antibiotics...

Sorry, I'm mostly venting here. Like I said, we're just having all of this sink in. Seeing her starting to move again, then smile, and start signing...was AMAZING!!!! I have to say, EVERYONE at Medical City Children's in Dallas is AWESOME! The nurses was so caring, I really felt they were just as concerned for Emma as we were. The 2nd night and day in the PICU, Emma was beginning to come back to us, and her sensory issues were coming on full-force, she was very fidgety (rubbing her eyes so much, she had little sores all over her). Her PICU nurse darkened the room, insisted everyone else nearby be quiet, and played a calming cd on the stereo. She would tip-toe around, whisper, and only if absolutely necessary would touch Emma. There were so many wonderful nurses, even the radiology people & transporters were great.

Life at home is going well. Honey & Nanny have been keeping us company, and that's been nice. My sister Denise stocked our fridge with home-cooked meals (that have been delicious!!). People have asked how the tube feedings are, how cleaning the mic-key is, etc. I tell them that, honestly, after seeing your baby in the PICU, hooked up to more wires, and IV's, etc...you can handle just about anything--especially when you see them smiling again.

Her feedings are going well. I have to say, I've been relieved about the fundo. Despite some wretching in the hospital when they tried 5 oz bolus feeds, she has not had any bad side effects from the surgery. It's great knowing she is not feeling the discomfort of reflux, and not aspirating on it. It's nice that we can get her the calories she needs each day, and know she is getting all her medicine, and not aspirating on that either. Her feedings are every 3 hours, she gets 4 oz over an hour. This leaves her with 2 hours in between...not much time, but she seems to not be bothered too much by it. She sits in her highchair in the living room, watching a video or show (she's getting into the Baby Einstein series). Our new house rule is that we keep Emma out of the kitchen, and that she does not see any of us eating or drinking. She signs for "eating" and if she sees a cup or food, she does go nuts for it. But, she is also understanding that the mic-key gives her food. She likes to play with a syringe after I flush the tube with water. She puts the syringe near her mouth, and then to the tube. She even holds the tube up to my mouth, as if to feed me!! Other than that, she does not mess with the mic-key at all. Although, I'm keeping it down really well with tegaderm. But, still, Little Tough, is handling things a million times better than I expected.

The worst part is changing the dressing. We have to do it twice a day. It's not hard because of what it looks like, the stoma & all look great to me. It's that you have to hold her arms down & she screams while we do it. After all she's been through, the thought of us causing her any pain or fear...just tears me apart. But, like everything else, we get through it. The good news is, we only have to do this much cleaning & dressing changes until the stoma heals, which should be in another week or so.

We return to the surgeon & GI doctor on August 11. Then we will find out if we can start some oral feedings. I need to schedule another video swallow as well. To see how she is doing again on liquids, and also on solid foods (cookies, puffs, etc.). We also see her pediatrician on the 12th for her 15 month check-up. I'm excited to see how her growth will be. I'm hoping that down the road, her stomach will tolerate larger feeds over shorter periods of time. We'll get there, I know. One of our goals this week is to get Madison into a school. Before the feeding tube, we wanted Madi to get out of the house & have a schedule, etc. With all of Em's doctor's appointments & therapies, she needs a break. And now, with the feeding tube, I know that Madi defenitely needs to be in school. She'll love it.

Oh, Madi's been sick too. The night we got home from the hospital, she had fever. She has a croup-like cough & just feels yucky. AND...poor Josh had to have an emergency tooth extraction & 2 root canals (ON Thursday!!). So, he was in the dentist chair most of Thursday & in A LOT of pain that night. He's slowly feeling better & able to use his mouth more. When it rains it pours I guess!!!!

This has been rather long. I think it was more for me, just to journal a bit & get things off my chest. Thankfully, we are all getting good sleep again. Emma is sleeping through the night mostly (she gets fed continuously 1 oz per hour for 10 hours each night). I am in awe of her, and her ability to bounce back.

I can't thank everyone enough for keeping Emma in their thoughts & prayers. We don't think it's anything bad, but Emma has had a slight fever yesterday & today (99.0-99.4...and her normal temp is about 96.5 or so). The doctor said if it goes past 100 or she has any other symptoms to come in. We're hoping it's just some fluke thing & will go away. She is still on antibiotic, so I think it might be something viral. She's just trying to stress her mommy out once again! I teased her (once we all sighed a HUGE sigh of relief when she left the PICU) that she was in big trouble! I defenitely feel about 10 years older...I have the new grey hairs to prove it. HAHA!

TAKE CARE! Thanks again everyone!!

Tuesday, July 26, 2005 5:47 PM CDT

We are going home tomorrow!! Sorry I haven't updated since the PICU. Things have been hectic, but Emma is better (YEY!). She started moving her neck, and did not need a transfusion (after 3 close calls...the last one they even had the blood in hand ready to go!). PHEW! We were out of the PICU on Sunday, with TPN through the PICC line & a slow start on the mic-key with Neocate. She is now tolerating 4 ounce bolus feeds (4 oz over an hour) through the day, and we'll do continuous feeds through the night, about 1 ounce per hour.

She looks great! Moving her neck, smiling, & playing. She is still getting 3 different IV antibiotics through the PICC line, about 4 times a day. 12 doses of antibiotics, poor baby! Her tummy is bothered by that, but otherwise, her tummy & all are doing awesome. She is a bit weaker in the trunk, not really able to sit too well. But, she'll bounce back, I know it!

Well, gotta run & grab some dinner. Emma is napping & my mom is here. We can't wait to be home tomorrow. As happy as I'll be, I know Emma & Madi will be even more excited for us to be home FINALLY!

Thank you again for all the support & prayers. What a week it has been, and I'm sure most of it has not hit us yet. We've been in auto-pilot this whole time. More good news, we will not be going home with the PICC line! They'll take it out tomorrow. YEY! She will go home on long-term antibiotics though. I'll detail everything more this week. TAKE CARE! (((HUGS)))

Saturday, July 23, 2005 7:46 PM CDT

Hi everyone. Emma is doing better, THANKFULLY! She is still in the PICU, but we are hoping she'll be back to the regular pediatrics floor tomorrow or Monday. She is starting to move her neck a bit, when she is laying on my or Josh's lap. The neurologist & PICU doc think it is an infection in her chest or neck, that isn't showing up on the xrays, but that with all the antibiotics it'll get better. She's getting IV antibiotics every couple of hours, 4 different types.

They did a CT scan of her neck & head, it showed some edema on the left side, but they think that's mostly from her staying in that position since Wednesday. They're basically baffled by it, and hoping that the antibiotic plan works. Once she moves her neck more (comfortably) on her own, then we can start helping her out with it, and probably get her some PT while we are here.

So far, her blood is starting to look better, so we do not think she'll need a transfusion any more. She had some VERY cheerful moments today, we saw some smiles & giggles, and signed a bit. She's in sensory overload in the PICU, so I'm anxious to get back to the ped floor. The hospital & staff have all be wonderful. They are letting Josh & I keep our stuff in Emma's old room, take naps in the bed there, shower, etc. What a huge help!!!

Thank you everyone for your prayers & well-wishes. Little Tough is showing us all how very strong someone so tiny can be. She amazes me so much. I can't wait to see her crawling again, getting into trouble.

Well, I better get back downstairs. I just took my first shower (YEY!). So, I'm ready for another noisy night in the PICU. Tonight they are starting TPN feeds through Emma's PICC line. I hope this perks her up some more. Once we get the okay from the doctors (probably once we are back on the ped floor), we'll start over again with the mic-key (feeding tube), starting with small amounts of pedialyte, then Neocate, etc.

We'll keep you all posted. Thanks again for all your support.

Friday, July 22, 2005 6:58 PM CDT

Hi everyone. I don't have a good update. After I posted last night, Emma started to feel worse. She's had fever since last night, and today has been out of it all day. They stopped the tube feedings this morning, she's had a chest x-ray, 2 stomach x-rays, lots of bloodwork done, urine culture. And they are giving her 3 different types of antibiotic around the clock. She may need a blood transfusion. She now has a foley catheter to monitor her urine output, and they also put in a PICC line. This is an iv that goes from her arm (big artery) into her chest (on the inside) so they can give her large amounts of iv fluids, draw blood from it, give blood, medicine, etc. It's more permanent than the regular iv's. She hasn't moved her neck or torso since surgery. Because of this & the surgeon's concern of something wrong in her tummy, they are moving her to PICU (pediatric intensive care unit). They'll do a spinal tap & upper gi sometime tonight. They will probably move Emma in a few hours (shift change right now for the nurses). Josh's family, my mom, & Denise are here & have been an amazing support for us today. Please keep Emma in your prayers. Thank you.

We are at Medical City Children's in Dallas, not sure if I mentioned that earlier. Take care.

Thursday, July 21, 2005 6:49 PM CDT

Hi Everyone.

Well, Emma is doing well. The surgery went as planned yesterday, taking under 2 hours. They have been keeping her comfortable with morphine & tylenol w/ codeine. She is in & out of it throughout the day. This morning they began pedialyte through the mic-key (feeding tube). She did well, so she is now getting small amounts (about 2 teaspoons per hour) of Neocate through the mic-key. So far, so good. They'll slowly increase the amounts, and will try bolus feeds (3-5 oz at a time) tomorrow if all goes well. We should be home by the weekend.

It's going better than I thought, I had anticipated her being more upset. But, I'm glad they are keeping her comfortable. She's signed hello, and given a high-five, but she is pretty sad most of the time. Josh & I got a few smiles today, after trying pretty much every trick we could think of!! We hope to see more of our old Emma tomorrow. Poor baby, she is proving, once again, to be Little Tough. Madi came to visit today, which she was very happy about. She misses her little sis a lot. I'll update later tomorrow or the weekend.

Here is a picture from yesterday. Sleeping like an angel...

Thank you everyone for all your love, support, prayers, and help through this time. We appreciate it all so much.

Tuesday, July 19, 2005 11:14 PM CDT

Hi everyone. Just a little note before I head to bed. We are just about set for tomorrow. Well, as set as we can be, I guess. Emma was amazing today, she had her (new) cardiologist appt (heart looks great & we really like this doctor! we don't have to go back for 2 years!). She was just the best during her echocardiagram...they played Baby Neptune (with fish & water, she kept signing) while it was done, and she laid there so content. Then she had blood drawn (yeck!). They were unable to do the Rett test, too much confusion between the labs. But, after thinking about it, I realized it might be a good thing. Emma is anemic, and drawing that much blood the day before surgery, well, I figured it's probably better we didn't do it. So, once she is up to it post-op, we'll do the Rett test.

Emma & I had lunch together after the doctor's appointment. I let her have a Happy Meal, not really approved by the doc's, but figured she may not have one for who knows how long. She enjoyed herself. During her meal, I asked her "Can you say Mama?" She laughed & pointed to me. Then I laughed & said, "Can you sign Mama?" AND...SHE DID!!! She did it & giggled, like "mom, I knew how to do this all along..." So, now she can sign "mommy" too. YEY! I nearly cried.

I know the time while she is in for surgery tomorrow will be nerve-wracking. I hope it goes quickly. I can't wait hold her afterward. Please keep her in your thoughts & prayers, and her big sis Madi too. I know the next few weeks may bring us some challenges, but I know we'll get through them. Little Tough will amaze us all once again, I am sure!

Thank you everyone for all your support. The guestbook entries continue to lift us up & make us smile. THANK YOU!!

Here is the link to Emma's hospital, Medical City Children's. Please email me (markhamfamily@msn.com) if you want more information.

www.medicalcitychildrens.com

Tuesday, July 19, 2005 4:03 AM CDT

Here are some pictures from vacation. Cristene (my sister) arranged for a photographer to come & take a family photo of us all, it was great!! We were all dressed in khaki & white, it looked awesome. These are the pictures we took during the photo shoot. There's also a picture of our view & the house. We had such a fun time!!! Thanks again Mom & Dad for such a wonderful vacation!

All The Cousins

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The Family

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Emma with Nanny & Grandpa

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The House (view from beach)

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Our View

Our Family

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Mommy & Emma

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Daddy & Madi

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I'll update tonight on the details for tomorrow. I'm up early to take more medicine, trying to knock out this cold!! Back to sleep for 2 hours now. Hope you like the pictures!

Monday, July 18, 2005 5:23 PM CDT

Hello! We are back from vacation, and we had a great time!! I'm having a hard time downloading the pictures, I'll try to do so later. We have some incredible pictures!! The girls loved the beach--we knew Madi was a water baby, but we never thought Emma would take to the sand & water so much. Thank you to my Mom & Dad for giving us the most amazing gift of the beachouse, I know my sisters & I, and our families will never forget this vacation. Thank you Mom & Dad too for flying us out as well. Thank you also to Missie & Randy for watching Sam and for Honey & Pops for watching the house while we were gone. We appreciate everyone's help!!

Emma learned the signs for ocean, fish, dance, and no. Yes, we are defenitely entering toddlerhood!! She enjoys signing "no" to me as often as she can! She even tells me to stop humming to her at night!!!! It's really hilarious.

We are getting ready for Wednesday. I'll post more info tomorrow, after we get back from her pre-op appts. She'll meet with a different cardiologist (2nd opinion as per surgeon) and then have her pre-op labs & other stuff done. I'll know more details about the hospital stay then. Her doctors told us to anticipate 3-5 days inpatient, with a total of 2 weeks for recovery time. Josh & I are getting nervous & scared, of course, but we are trying to focus on the positive things that will come from the procedure. Emma ended up with another ear infection the last few days of vacation, but luckily it is getting better (we saw her ped today) so we are a go for surgery. Also, Emma has lost weight again, so that just (once again) reaffirms this is the way to go.

Will check in tomorrow & hopefully add some pictures too! Take care!! Thanks for stopping by & checking in on us, even while we were gone!!!

Tuesday, July 5, 2005 10:25 PM CDT

Hi! I hope everyone had a great 4th of July. We had a mellow weekend, Emma still was not feeling too well. We had fun though--Madi & I got to see "Herbie" with friends (Janice & Lance), Josh & I went on a date (Thanks Honey & Pops!), and on Monday we had Denise, Jacqueline, & Tomas over for some pool & sprinkler time, and Josh grilled. That was a lot of fun. Also...Josh cleared out my side of the garage, so the XTerra is parked inside officially! YEY!!! THANK YOU! With all of Emma's (especially recent) temp regulation problems AND the (pretty much unbearable!) Texas heat (100+ degree days), Josh said that was priority. It makes such a difference!!! I cannot wait to be at the beach, we can get out more, without worrying about Emma getting overheated. It has been so horribly hot lately, we've only gotten out to go to doctor's appointments. A few more days, and Emma can explore outdoors some more, and feel all the wind blowing she wants!! We are SO glad we are getting away before her surgery. It will be awesome to have the time with my family, and us as a family to just relax. We're getting so excited!! I will post pics when we return.

I took Emma back to her doctor on Friday. They were concerned about how pale she was, and that she was still sleeping all but 6 hours a day (literally, she's only up for 2 hours in the a.m., 2 hrs. at lunchtime, and 2 hrs in the evening). They checked her urine & did finger prick (CBC) blood test. She did fine, the urine test showed some abnormalities. So, it looks like she may have a UTI, luckily we caught it early (before it affected her kidneys). We think that is combined with a virus and teething. She is still real sleepy & irritable, really not herself. I think she is getting like 5 teeth at once--she only has her 2 bottom teeth so far, but the rest of her gums are so red & bulging. Poor baby.

Signing update!! Emma began signing "fan" & her own version of "I love you" this weekend! She is getting real good at her own style of "Daddy" too. It's so exciting, every few days, she has a new word to show off!! She is trying "dance" & "music" as well. In addition to those, she can also sign: more, all done, phone, hi/bye/night-night, and pointing too!! Seeing Emma signing has been the most wonderful thing!

Well, I hope everyone has a good week. I'll probably update once more before we leave. Please sign the guestbook, it means tons to us. Thank you for coming by!!

Thursday, June 30, 2005 4:55 PM CDT

Big News! Woo Hoo!
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Emma signed "Dada" today!! I am SO excited!! After her nap, she was babbling some, so I asked her to say "Dada," and she right away put her hand to her head & smiled. I was so happy, gave her a high-five & a BIG hug. Of course, I had to laugh--I then asked her to say "mama" & she pointed to me & just giggled away! Her sense of humor just cracks me up. I hope she will sign it for Josh when he gets home. This his her belated Father's Day gift for sure!!

And, while I'm on the subject of my awesome husband, Josh...

I want to thank all of the amazing people he works with. I have been blown away by the kind emails he's received, and by the guestbook entries. Their support has been unbelievable.
THANK YOU ALL!!
(((HUGS)))

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Lastly, Emma is still not feeling well. I brought her to the doctor on Tuesday. Her throat was red and her respiratory rate was high (fast). So, they tested her for strep & did a chest x-ray (both negative, thankfully!). We think it's just viral, and her breathing is something we'll monitor now. She has slept most of yesterday & today, through the night as well...for Emma, that is excessive. Also, she isn't eating well at all, but is taking some thickened water (looks like hair gel!) and apple juice through a syringe. She had a fever (for her--99.6) today, even after motrin. So, I have a feeling we'll follow-up with the doctor tomorrow. We want her to feel better SOON and, even more, want her to EAT too.

Thanks for checking in!

Tuesday, June 28, 2005 0:43 AM CDT

New pictures! I finally got around to adding some more. I'll add more to this main page in a few days (it takes a while, because I end up having to re-write the HTML for most of the page...). Here are some I took today & in the photo album, there's more.

Not sure why this last one is so tiny. I know they all look the same, but I love the progression of her face & its emotions. You can just see the wheels turning...

Other than that, nothing new to report. Emma was fussy today (a rarity for her!!), so I'm hoping it is teething and not another ear infection. Her eyes are puffy & one's a little pink/purple which is usually a sign of ear ickies.

She is trying out some new signs: "all done" and "no." I'm SO proud of her!!!

Have a good week!

Sunday, June 26, 2005 0:07 AM CDT

Hello--hope everyone is having a great weekend. Well, Emma's emptying scan results were normal! It was really ironic...all of the other tests Emma has had this year (w/ the exception of her MRI and bloodwork) ended up showing something (usually that we did not really expect). This test, we thought for sure would show delayed emptying. Go figure! So, that's really good news because she will not need the additional pyloroplasty (which would add 1-2 hours onto the surgery). Also, Josh & I feel like we have now ruled out any other causes for her reflux, and that all the necessary tests have been run.

I've sent a memo to Emma's neurologist requesting the Rett test be done with her pre-op labs. I'm going to follow up with him this week. I've also asked if he wants a biopsy taken during the surgery. I hope he says yes, because if this next round of tests comes back negative, a muscle and/or skin biopsy would be the next step anyway. I know all of this takes time, and mostly (I think) they are waiting for Emma to be at least 15 months, to see where she is then & make another assessment. BUT, this is the longest we've gone without "forward movement" on the diagnosis path. For so long, she was giving blood & urine samples, diagnostic testing, etc. In my heart, I feel like the quicker we get an answer, the more we can do for Emma.

More good news...we'll be going on vacation in less than 2 weeks!! Not sure if I mentioned that before. Nanny & Grandpa (THANK YOU!!!!) are helping us to fly out there. So, we'll go for a week, be at the beach, and get to spend time with my family. It will be amazing to have us all there, together, for a week...AND to be in a beautiful house right on the beach. I think it's just what the doctor ordered (literally LOL!) to get us ready for Emma's surgery (July 20).

With everything else going on, I don't think I've updated on the awesome things Emma is up to lately. She is starting to cruise, and can pull herself to standing & then come back down to sit. She has days where her motor-planning is off, and she has a hard time doing things like rolling over, sitting down, etc. We are trying to figure out if there is a pattern or cause for this. We've heard though that it can be normal for kiddos like Em, to have higher & lower functioning days. But, on good days, she's becoming quite the explorer!!

Oh, and Emma is dancing now!! She LOVES music. For almost 2 weeks now, we go into her room a few times a day & have a "dance party." Madi, Emma, & I just hang out & dance. DJ Em spins the tunes (LOVES playing with her radio!!), and as soon as you make the sign for dance, she starts rocking back & forth or swaying side to side. It's SO cute. The past few days, she's even begun "humming" along to music.

I have to say HAPPY BIRTHDAY MOM/NANNY!!! THE BIG 60!!! I know you may not read this until you are visiting us, but wanted to let you know we love you & hope you had a GREAT day! Glad we'll get to celebrate with you in 2 weeks at the beach.
Also...HAPPY 1ST BIRTHDAY SAMANTHA!!! Keep growing, cutie pie! We had so much fun at your party today, Madi loved swimming & Emma enjoyed the special treats your Mommy made her.
And we hope Jacqueline & Tomas get to feeling better real soon!!!
Megan, we hope the fever is going away FOR GOOD!! Sorry you had to go through so much these past few weeks. We are keeping you in our thoughts & prayers. Keep feeling better, kiddo.

Sending HUGS to everyone. Thanks again for all your thoughtfullness. Please sign the guestbook when you come by, even Madi loves when I read her the entries. TAKE CARE!

Wednesday, June 22, 2005 7:16 PM CDT

Thank you to everyone who has signed the guestbook, it has been amazing to read the entries & feel all of you reaching out. Several of the entries have even brought tears to my eyes, joyful tears. Thank you for your kindness, this journey would be much harder to travel without your love & support.

Despite the craziness of today, it really was a good day. Emma did AWESOME (wow, seems like I'm always saying that! She is incredible!) during the scan. When we arrived there, they did not have orders to sedate her (her doctor said she would have to be sedated in order for test to go well, she'd have to lie still for an hour on a table). Josh & I just wanted the test done and over with, so we figured we'd try it without the anesthesia (which, scares me so much anyway). So, I fed her the Neocate Jr. (her formula) pudding with radioactive stuff (yummy) in it. Then she had to lay down (ugh!) & of course was VERY upset. But, the tech was great & he wrapped her all up (think Mummy) and they had her all supported with blankets & comfy soft things to keep her still & secure. It was GREAT. She calmed down after 5-10 minutes or so and looked so cute. Well, if you could have seen her...she stayed like that for more than 90 minutes!!!! I sang to her (by the way, if anyone can think of some cute lyrics to sing to her involving her nickname, "Little Tough," I'd love to hear them!!), rubbed her hair, and Josh & I took turns talking to her. She did her "eye talking," where she'd look at something, look at me, look at that thing again...then I'd explain it to her. It's great when she does this because we get to chat, I get to learn more about her & what she's thinking about, & I think we help her be less scared of things. It's hard to understand it, until you see it. Anyway, we were just thrilled at how great she was. GO EMMA!!!

We did not receive the results. Don't even get me started on that...the tech wouldn't tell us ANYTHING about it. Even the GI & surgeon weren't able to get any info (as of late this afternoon). So, I guess we'll know the results sometime in the next few days.

After her test, we had lunch & then off to the surgeon, Dr. Renard. We really liked him. He's pretty young (but not too young! LOL!), is defenitely on top of the newest techniques, etc. But, he's also conservative (explaining different stitches he does, extra antibiotics, etc.). He agrees that this is the next, most appropriate step for Emma. He reviewed everything with us & answered all of our questions. She'll defenitely get the fundo (laparoscopic Nissen) & gtube, and then depending on scan results, a pyloroplasty. More good news is that she'll be getting a MIC-KEY (low profile) Gtube right away. From what we've researched these are better than some other ones out there (esp the long ones). So, we are happy about that. From what I've seen (and I'm still learning about all this...so no pro here!), I think the gtube will resemble the air valve on an inner-tube. It was a big relief meeting the surgeon & the fact that we like & trust him. His scheduler will contact us by Friday to set the date. We are going to do it after vacation (so it will be sometime during the last 2 weeks of July).

Lately, I find myself asking for signs, to know if what we are doing is the right thing. Josh & I both swear that Emma's reflux & choking has worsened these past week, so it's made us even more sure this is what needs to be done. Well, likewise, today at the surgeon's office, out of the blue Emma raises her hand & stares at the doctor. This is her "give me five!" stance. So, Josh says "she wants you to give her high-five." And, Dr. Renard immediately did, smiling & joking that he thought she was going him a question. She had a big smile on her face. If you know Emma, you know she's quite shy, so for her to want to high-five this doctor--that impressed me!!

I want to thank Jill for taking Madi today & having a sleepover too! That was a big help & I know Madi will have a blast. I feel bad for Madi, having to deal with all of this, and time out of the house doing fun stuff is just what she needs! Thank you Honey & Pops for bringing dinner over tonight. Yum!! And, thank you to everyone who called us last night & today to wish Emma well.

Monday, June 20, 2005 1:39 PM CDT

Hello. Well, Josh & I had the weekend to let everything soak in & we feel confident now that the surgery is the best (and only) option for Emma. We went over the pros & cons, and the pros (like NOT getting pneumonia, kidney damage, etc.) FAR outweighed the cons of it. I won't get into the cons, because I am aware of them, but am hoping Emma will come through this like she does everything else. She is Little Tough, after all! LOL!

We had a nice weekend, Madi had a sleepover with her cousins & Denise made us dinner for BOTH nights. WOW! Father's Day was nice & relaxing, we got to see Denise & her family, and Josh's parents as well. My friend Janice even brought us over 4 baby trees for our backyard. YEY!

This is another busy week... I have to laugh because I haven't used a planner since I worked (before Madi!). And, actually, I think I use it more now than I ever did--or at least it's much more full now!! Emma has (as usual) OT & ST and she also has PT this week & our ECI coordinator comes too. And, her emptying scan & surgeon consult on Wednesday. Very anxious for Wednesday. They will put her under anesthesia for it & (of course) that always makes us nervous. It will be interesting to see the results of the test. We've compiled questions for the surgeon, most of which I got from message boards & other moms (what would we do without the internet??). I'll update after the test & appt with surgeon.

Thanks again for signing our guestbook. It especially picked us up these past few days! Take care.

Madi wanted me to put this Lilo picture in...
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She can hula just like her! Oh--and she's got her hula dress all packed & ready for the beach!!!

Thursday, June 16, 2005 10:38 PM CDT

Hi. Emma had her GI appt today & we heard what we thought he'd say (but hoped he wouldn't). Emma needs a fundoplication, gtube (feeding tube into her stomach), and possibly another surgery (done at same time) to help her delayed gastric emptying.

This is quite a bit to take in. We want to help Emma feel better & keep her healthy. At the same time, surgery (esp the fundo) is so scary. We trust our doctors & feel like we are past the point of trying other options. Actually, according to the GI doctor, we are out of options. That was (of course) hard to hear. Especially since Emma is our little miracle baby...she came here early, blue & barely breathing then recovered. She had 2 holes in her heart, which closed up on their own & earlier than expected. She had jaundice so bad & was just about to be admitted into the hospital when it got better. So, that's been the way things have gone for Emma. And to think of her getting surgery & the ramifications of this procedure and a feeding tube--frightening to say the least. Then I think of her aspirating on her spit-up, or becoming dehydrated and damaging her kidney.

If it weren't for those 2 things, I don't know if we'd agree to the surgery. But, aspiration is scary, especially since (from what we have read) it can cause "silent" damage. Meaning, she may not end up with pneumonia (for a while at least), but her lungs are still being damaged & down the road, this could lead to many problems. And, with her kidney, we still do not know if her last kidney infection caused any permanent damage (will not be able to safely say until September). So those two things are the leading factors in our minds right now. The third is her lack of growth & slowed weight gain. We see her pediatrician tomorrow for a growth check, but according to the GI doctor's measurements today, she is still borderline FTT (failure to thrive). The concern is more about her height than her weight--weight is (usually) easier to gain. The GI doctor warned us that another upper respiratory infection where she is not eating could be very risky for her.

Emma will still be fed thickened Neocate & Neocate Jr. by mouth, we will supplement via the tube, and also give her additional fluids & her medicine through the tube. There is no timeline far as getting rid of the tube. Her growth will be monitored and the hope is that it could be removed in 6-12 months. One problem is that since she does not yet have a diagnosis, we do not know what is coming down road. She could (and we hope) continue to progress in all areas, and have no need for supplemental feeds long(er)-term. Or, in the case of Rett Syndrome or another similar disorder, her nutrition demands could be higher, she could have a continued problem with growth, food aversion, etc. that would necessitate tube feeding.

We meet with the surgeon on June 22nd. That morning, Emma also has an Emptying Scan (she will be asleep for this test, they'll fill her belly with food, then for an hour or more take pictures via X-ray & measure the speed that her stomach digests/empties the food). We are keeping our fingers crossed that surgery can be held off until after our family vacation in July. We are SO looking forward to the beach, seeing all my sisters, my parents, and just relaxing. Obviously, Emma's health is priority, so whatever the doctors tell us we will do.

As I research more on all of these procedures, I'll try & put some links on here. Please sign the guestbook when you drop by, it really makes our day. Thank you!!!

Tuesday, June 14, 2005 4:02 PM CDT

Hello. Hope everyone is having a good week. Please keep my niece Megan in your thoughts & prayers. She has spiked a high fever (104) each day now for a week (without any other symptoms), and has lost 3 pounds. The doctors have run a ton of tests on her and she's being seen by the doctor every other day, so far they do know she is fighting some sort of inflammation.

We received the video swallow results yesterday. Here they are, summarized:
Aspiration of thick (nectar consistency) liquid, silent aspiration, laryngeal penetration of thin & thick liquid. Oral phase dysphagia (swallow dysfunction) characterized by premature spillage of liquid into pharynx (this means her tongue is not doing what it should be doing). Pharyngeal phase dysphagia characterized by aspiration of nectar thick liquids consistent deep penetrations of thin & nectar thick liquids; slight residue of honey thick liquids and delay in swallow initiative (this is related to her hypotonia & sensory issues; she can't tell when she needs to swallow and she does not have the protective reflexes to prevent aspiration or to choke). Thin liquids were from a Brown's stage 3 nipple - penetration observed; all other liquids were presented by spoon (hence the concern that she may be penetrating when she bottle feeds even with honey thick formula).
FYI...nectar & honey are just the consistencies of her food--not actual honey, etc.

So, we are to return in 3 months, continue with her oral motor therapy, and she is to only receive thickened liquids to honey or pudding consistency. We're not sure where things will be come the weekend. Emma's urologist is concerned she will not be getting enough fluids, become (more) consitpated and/or get more UTI's. He mentioned tube feeding, because he doesn't want to risk her kidney being possibly damaged (we still do not know if her first infection caused permanent damage). So, I'm not sure what the GI & ped will decide. We see them on Thursday & Friday.

I think Emma may be getting sick. Since Sunday she has been running low-grade fevers on & off...well, high for her (they've been around 100.3...I've taken her temp at times as low as 95.3) and today & yesterday each she had a bout of diarrhea. Too much information I'm sure! But, today she is not herself & so I think this is turning into something. She has been very cranky today, self-stimming (hand flapping, hair pulling, head rubbing, etc.) today, refusing to nap, and zoning out a bunch.

We're having to feed her every 2-3 hours now. We tried making our new goal of 1000 calories per day. But, her tummy was so bloated & she was refluxing more...so she was unable to take as much food at just 3 meals per day. We are trying 5-6 meals today. It's hard because it takes her 20-40 minutes to take a 4 oz bottle! This cuts into our floortime (therapy in our mind, but play for her!) and makes life a lot harder on Madi. We're hoping to enroll Madi in school or daycare so she can have some time out of the house & make some friends.
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Lauren

Thursday, June 9, 2005 10:20 PM CDT

Hi. A few updates...

I'll start with the bad new first. Emma had her video swallow today & the results were not what we had expected. It showed that Emma had 2 episodes of "deep penetration" with unthickened Neocate (her formula), and 1 aspiration with nectar consistency Neocate. As far as they could tell, she did okay with honey consistency Neocate (although she was not thrilled by that point, refused bottle, so I spoon-fed her some of the honey consistency). She did fine with the baby food. Finding out Emma is aspirating was scary. And, that she was still having trouble with a thickened formula. Worse, was that during the test, she did not choke or gag AT ALL. She was pretty cool (although a bit agitated to be there!) through it, and did not once show any signs of a problem. That was part of my shock when they were going through each variety of thickness so quickly and then to find out the results. I never expected her to be aspirating. So, we are now to make her Neocate into honey consistency using Thicken Up. We go back in 3 months to see how she is doing at that point. The speech pathologist who was there for the test was great, and she said this will be a little tricky with Emma, because we won't know when she is aspirating or penetrating from physical signs (except when she must get so much liquid into her lungs that for her, she chokes). In the beginning, we were told all of these things would go away by 12 months...the reflux, the gagging, the milk/soy intolerance... It's just frustrating that in a lot of ways, it seems things are getting worse for Emma not better. She just breaks your heart, right after the test she was just giving this big smile & being her sweet self. I just want her to be all better & it stinks that I can't just make that happen.

Alright...now for some GOOOOOOD news!!

I've been trying to focus on the positive news we got yesterday. We got A LOT of GOOD news yesterday. First, my mom does not need another catherization--the tests all looked good. She will stay in the hospital until Saturday because they are switching the medicine she takes for her a-fib, hopefully this will help her out. Speaking of hearts, Emma's is whole!! Her second hole, the ASD looks completely healed! YEY!!!!! That was a GREAT relief leaving the cardiologist's office (and Emma was awesome during the EKG & echocardiagram...so was Madi, my little helper!). THEN...I got a voicemail from my pediatrician, called them back and it appears that our insurance company will cover the Neocate. We are VERY happy about it...but still holding our breath because we are not exactly sure how much they'll cover, for how long, etc. BUT...at this point--any little bit will help!!! Yesterday was a GOOD NEWS day.

ALSO--Emma started pointing yesterday! This is her new form of communicating with us. She points to something & I tell her about it, and she gets the BIGGEST smile on her face. We are signing a lot to her, this seems to make her understand us more. And, now that she sees the power she holds in her pointer finger, it's been great having "conversations" with her. For so long, we were caught up in her saying "mama" or "dada," now it's just awesome to interact with her. I'm seeing her cute little sense of humor, and her curiosity. WOW!!!

Monday, June 6, 2005 3:41 PM CDT

Hello...

Well, we had a GREAT weekend. First off, let me thank Denise for giving us a CHORE-FREE weekend; she had her cleaning lady come by & give us THE WORKS! So, we did not have to lift a finger this weekend (or really this week!) & have a NICE CLEAN home. THANK YOU GUYS SO MUCH!!! What a way to kick off the weekend, huh?

Saturday we had Josh's friend, Derek & Aly's wedding. What a blast! Josh & I have not danced that much since our wedding!! We had so much fun, it was a GREAT time. Just getting a bit dressed up & going out (alone!) with Josh was awesome, and throw in nice people & dancing, how fun! On Sunday, we took the girls to the town festival for a little bit. It was nice, but HOT (98+). Madi got to go on some rides, play a few games (even winning something for Emma!), and of course have funnel cake. We couldn't be out too long with the heat with Emma. And, she was pretty much zoned out the whole time...and I don't like her being like that for too long. I bet some moms of toddlers and one-year olds would LOVE to get to go to the park, the mall, a carnival, anywhere without their child trying to climb out of the stroller, fussing, wanting to get out, play & explore. I long for that with Emma. She gets so floppy and unexpressive...just in her own world. So often, with Emma, she appears healthy, so it's easy to forget that she has health problems, and that doctors are trying to find a diagnosis. Times like that are very real, visual reminders that there is something going on inside Emma's head that's cause still escapes us (and the experts). Anyway, here are some pictures from the carnival:

Is Madison just too funny or what? My little fashion model! I'm also including some pictures of my mom's visit. She is doing pretty good, by the way. They are back home, and she is recovering. She is having chest pain, still, and will see her cardiologist tomorrow. It could be that the blockage was so large, and they worked for quite some time to open the artery, that her heart is just sore from it, hence the chest pain. Thank you again for keeping her in your thoughts.
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Where's the beach?
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Eating french fries in her Bumbo seat (we love that!).

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Lunch date out, the girls!
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Emma showing off her new shoes from Nanny!

Emma saw the dermatologist today, regarding the mole she has (since birth) in her diaper area. It will need to be removed, but not until she is 5 or 6. And, unless it changes at all between now & when she's 4, we do not need to go back until then. A plastic surgeon will remove it.

Emma will have her video swallow done on Thursday. This is a fairly simple test, where Emma sits in a chair drinking liquids of different consistencies, then pudding, and a cookie. A speech pathologist & occupational therapist (as well as Emma's ST, hopefully) will monitor & evaluate Emma throughout the test. The liquids & foods have barium in them, so the radiologist will be able to see them going from her mouth down to her stomach. We will get to see if she aspirates (and why she gags & chokes so much) and if her esophagus functions properly (it could be that food/drink moves too slowly down, and that causes the choking). This will give us a good picture on her oral motor function, and if she is having any other issues with her GI tract. I'm hoping she'll be calm through it. I think that since she is sitting up, not laying down (like most of her other tests), she'll do okay.

We were also supposed to have her cardiology follow-up. But, I'm going to change that until the end of the month. These next 2 weeks, I have LOTS of appointments, most in Dallas (2 hour round-trip), so I'm trying to stagger what I can. And, more than likely, her heart is fine (ASD closed, we think), so that appointment is not urgent. She'll have speech, occupational, and physcial therapy this week too of course.

That's about it. Still struggling with her to drink more. For whatever reason, she cannot or will not consume more than 4 ounces at a time. Mostly, she is drinking 3-3 1/2 ounces. We are going to try giving her cereal mixed with Neocate, to give her an extra couple of ounces per day. We are nowhere near the 20 ounce min goal. Please send some hungry vibes to Emma!! She is sleeping SO much better, that new medicine is helping. In fact, since she started it, she's only gotten up 2 nights, and went back to sleep very quickly. She is only taking 1 nap...but as long as she sleeps through the night, that is FINE with me!!

Here's a few more pictures of the girls. ALL of these pictures today are from my cell phone. What would we do without technology? What would I do if Josh didn't work for Verizon Wireless??? Haha!

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HAVE A GOOD WEEK!!

Thursday, June 2, 2005 10:32 AM CDT

Hi there. Thank you everyone for keeping my mom (Winnie) in your thoughts & prayers. She is out of the hospital (yesterday afternoon!), and if all is still going as well as it was yesterday, they may even be on the road back to NJ today! No driving for my mom for 2 weeks, and (of course) she'll have to see a cardiologist in NJ. We are all relieved that she is out of the hospital & that the surgery went well. The doctor told her that had they not fixed it when they did, she'd have had a fatal heart attack. That is scary. Thanks again everyone for your support.

Well, Emma is back on Augmentin and new ear drops (with a steroid in it...Cipradex I think). I feel like de ja vu for the 5th or so time now. For whatever reason, dealing with this ear infection is bumming us all out big time. I think having her tubes put in, we felt like at the least, she/we wouldn't have to go through ear troubles again. This morning, I thought Emma had fever (head felt warm), but sure enough her temp was 96.0. Our Little Em loves to keep us scratching our heads! The other day when she had a 100.5, she was acting more like 102 (sleeping A LOT, weak, cranky). The doctor on Friday said that (for now) when Emma has a temp over 99.0, it's a fever for her.

Our pediatrician feels like the ear infections are pointing to a worsened reflux problem. We see the GI in 2 weeks, and Emma has her video swallow next week. I think she may be able to get a higher dose of Prevacid, and maybe that will help. It's not a coincidence to me that (for a SECOND time) when she starts eating more solids, her reflux (and health) worsens. Both times we upped her solids-intake, her reflux worsened and her growth was affected. Sure, other things could be coming into play...BUT, I am hoping the GI listens to us a bit more this time around. I don't think there's much else he can do to help her, but at least maybe now he'll see the correlation. I'm assuming its her delayed gastric emptying causing her reflux to worsen, solids take longer to digest, and therefore it sits in her tummy more and her tummy is never really empty.

Thankfully, with her not as congested as the weekend, she is drinking more Neocate Jr. She was down to 6-8 ounces PER DAY over the weekend. The past 2 days, she's taken 10-12 ounces. Josh & I were wiped out by trying to feed her these past few days. What do you do when your baby is screaming (and I mean screaming!), and in no way, shape, or form will take a bottle? I even tried sneaking them in while she slept. Of course, as she gets upset & cries, she chokes & gags. And it's just not a pretty process. All the while, we're not wanting to force feed her & give her some eating complex later down the road. We're trying to not stress out, and are hopeful once this infection is gone plus the appetitie stimulant medicine, she'll be reaching her 20-30oz per day goal.

Cute story time: Emma received a gift card for her birthday (THANK YOU Aunt Denise, Uncle Julio, Jacqueline, & Tomas!!!!!!!!!!) and so we went to Target to pick out something & also get her Neocate Jr & (what else!) her prescriptions. Anyway, we found these Little Mommy twin babies. So, we picked that out, one baby for Emma, one for Madison. They're very sweet dolls, and Emma can play with it (no blinking eyes or removable parts!!). She loves this baby doll!!! I showed her how to "love baby" and signed that to her. She grabbed it & was hugging the baby. She's been "kissing" it and investigating the doll's eyes, mouth, hands. This is the first doll or toy she's really tried to grab--she leaned her whole body toward it, "asking" me to get it for her as I was rocking her (to sleep I'd hoped!). When I picked it up, she just grabbed it & hugged the doll. Then I kissed her & then the doll. She had the BIGGEST smile & laughed. So then she'd pull her doll away, then push it toward me (I was holding her during this...so much for nap time! I couldn't resist playing with her like this!!). Emma was just smiling & giggling. I'll try and get a picture of the proud mommy & her new baby!! TOO CUTE!

This was (to me) a monumental moment. Emma & I were connecting, and she was so into playing with me and this doll. At times, she can seem aloof & not interested in us or toys (lately she is much more "with us" than ever before, thankfully!). So when we have moments like this, when she is enjoying herself & just doing fun baby stuff, it is THRILLING! Thanks again Aunt Denise & family for the gift card!

Tuesday, May 31, 2005 2:58 PM CDT

Hi Everyone. Just a quick note to ask you to keep my mom (Winnie) in your thoughts...and to let those of you who know her know what's going on. My parents left on Sunday to head back up to NJ from TX. They stopped in Tennessee, and my mom had chest pains. She took her nitro (mom has had several stents, angios, and a bypass), the pains continued. So, they went to a hospital where she was admitted; her blood pressure was way up & it took LOTS of nitro for the chest pain to subside. She went in for her catherization today (would have been done yesterday...but her blood was too thin, so they were giving her Vitamin K shots) and they had to put a stent in. The blockage was in a main artery, her LAD.

We are thankful that they happened to be in Knoxville at the time, the hospital is good, as is the cardiologist. They have a good heart unit. Mom should be out in the next few days; I'm sure they'll have to stay in TN for a few days after that. Thank you for your continued kind words, prayers & thoughts for Emma, and now her Nanny.

Here's another picture of Emma enjoying that cake. There are also more pictures (in case you missed them!) on the journal history page.

Take care.
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Saturday, May 28, 2005 9:12 PM CDT

Well, Emma finally had her birthday party today! Despite the heavy rain & her double ear infection, we had a blast. Thank you Honey & Pops for letting us take the party indoors at your house! We had planned for it to be at the park. I think everyone had fun, it was a nice morning party with donuts & even (dairy, soy, corn, and egg free!!!) cupcakes for Emma!!! I found cake & even cookie mix that is allergy-free for Emma. Even non-dairy chocolate in it! It was AWESOME to see her enjoying CAKE!!! She LOVED every minute of it. SEE??

Thank you all for coming. It was great because Emma had both sets of grandparents there (Nanny & Grandpa in from NJ!!), and her great-grandma too!! Thank you all for making her special day so wonderful.

We nearly canceled Emma's party on Friday night (then Josh & I realized that with the way things have been lately...this party would never happen!!). I had to bring Emma to the doctor, her one ear was draining, and her congestion was getting very thick. One tube is working right, draining the junk out--the other tube is clogged up. So, we have to give her ear drops (yuck!) and Omnicef. The doctor also cultured the ear junk to make sure it wasn't an atypical infection. We feel so bad for Miss Em. We thought at least her ear troubles were over after getting the tubes in. And, of course, with her not feeling well, she's barely eating (or drinking, I should say). Which just really stresses Josh & I out! Funny though, she gobbled up that cupcake just fine! Hmmm...maybe we need to add Neocate to it??

Just click on a picture if you want to see it larger!

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Hope everyone is enjoying the weekend. Please take time to remember all who have died for our freedom & those that are protecting it right now.

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"The greatest glory of a free-born people
is to transmit that freedom to their children."
~William Havard~

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Thursday, May 26, 2005 5:44 PM CDT

Hello. Here are some new picture of Emma. Here she is doing her workout, toning those arms!! Haha!

Emma is sick today. She was up most of the night with a runny & stuffy nose--it took turns & either way she was miserable. Today her nose is just running & running, and she's sleepy and sad. I hope she can get some good sleep tonight & feel better tomorrow.

I went back to our pediatrician yesterday, because Josh & I still had some concerns regarding her lack of growth & Rett Syndrome also. We are going to monitor her growth monthly, put her on a Neocate Jr. diet (1-2 snacks of table food per day)--hopefully 20-30 oz per day, and add a vitamin. Also, she is prescribing an antihistamine for her eye/nose rubbing (allergy related, we think), this may also help her sleep & increase her appetite. Wow--talk about an all-in-one drug!!!

Also, we are going to hold off on the MECP2 test for Rett. Our doctor thinks we should wait until September when we see the neurologist again. By then, she may have more clinical signs of it (she is showing some now, but she is so young, a lot of the major symptoms start showing up between 12-24 mos) & therefore get a clinical diagnosis regardless of what the test shows. Also, if the test comes back negative now, we may get "false hope" or dismiss the possiblity of RS. About 20% of girls may test negative for it, and still have Rett Syndrome. Also, I think some may not test positive for a while, they are still doing research on the gene, its many mutations, etc. Anyway, I feel more comfortable waiting now. My doctor reassured me that we are doing all we can, her therapy is intensive, and we are on track to help her the best we can, no matter what she may be facing.

Thank you everyone for your support. When I get bummed out, or get to reading about too many yucky things about Rett's or something else, reading the guestbook entries here pick us all right up. We are amazed by everyone's kindness & comfort you offer. THANK YOU!!!!!!!!!!!

Sunday, May 22, 2005 10:18 PM CDT

Hi. Well, we are over the soy trial...Emma continued to have tummy troubles, worsened gas, and eczema that by Friday was from head to toe. At her well baby check that morning, her pediatrician said to go back to Neocate, she was reacting to the soy & it would only get worse. We'll do another trial in 6 months. We're all bummed about that--mostly because it would open up a doorway to a variety of foods for Emma. And, because Neocate is liquid platinum...lol...at least that's about how expensive it is! I had all but put the battle with our insurance company to rest, thinking Emma would be on soy & have no need for Neocate. So, this week, I'll be back on the phone and fax, trying to have them cover (at least some!) of the formula (Neocate infant formula ran us $600-800 per month, not sure yet what Neocate Jr. will cost us). It's frustrating...

We also found out at Emma's well check that she has dropped in growth (height & weight). At her 2 & 6 month checks, she was in the 25% for weight, the 10% at her 9 month check. At 6 & 9 months, she was in the 25% for height. On Friday, she was down to the 3% for height and 5% for weight . This stunned me, because she's looking so chubby & doing so much lately...I thought for sure she'd be going steady up on the charts. I did realize she's still in some 0-6 mos clothes, and 9-12 mos stuff is very roomy--but I didn't expect this. So, we have to watch her carefully the next 3 months, making sure she is consuming enough & growing. The problem could end up being her system...in which case she could eat all day & night and still not grow properly. Their bigger concern is her slowing of growth (her weight to height ratio is healthy...the problem is she is barely growing), and therefore failure to thrive.

Of course, this just raised another red flag for Rett Syndrome. As most Rett girls are smaller than average, and tend to slow majorly in their growth around this time. The diagnosis of Rett is gnawing at me...even though I know the diagnosis itself would not change Emma's treatment, or even her prognosis. It would not change much at all...just an answer. Most (actually, all the girls I've come across on the website, www.rettsyndrome.org) girls with RS do not speak at all, some can say a few words. Also, because of their tendency to have repetitive hand motions (hand wringing, clapping, etc.), they are unable to use sign language. Many girls also do not walk, or can only walk short distances. Right now, Josh & I feel like we are at a fork in the road...one way being Rett Syndrome, and the other unknown (maybe some other disorder, etc.). It would ease us to know for sure she does NOT have it...or allow us to prepare for the possibilities, if she does have it. I guess if the next 2 months bring more concerns, I will push the neurologist to do the MECP2 test, and just deal with the insurance company later.

Can I tell you how much I appreciate Emma's Speech Therapist, Sheila and Dietician, Kathy? They are both great. Kathy has been helpful in alternative dairy/soy/corn free foods to try with Emma, her caloric needs, etc. And, Sheila is great, Emma really likes her too. They both suggested a video swallow & to try Simply Thick added to Emma's bottles. She still gags and chokes a lot when she takes a bottle, and when she spits up. My pediatrician has ordered the test & Sheila said she wants to come with us when we go. How great is that? Normally, an ST and Occupational Therapist are there for the test anyway...and with Emma's sensory issues, it will be great having Sheila there instead of some stranger. That test will let us know if Emma is aspirating (and to what degree) when this gagging occurs. It's a non-invasive, fairly simple test. Also, the Simply Thick has been nearly as amazing as Neocate! Her first bottle with it, Emma was relaxed and she took her time (had a great sucking rhythm, and was breathing with ease...what a change!!). I'm so thankful Sheila suggested it.

I hope everyone has a good week. It has been near 100 the past 2 days...UGH! And, our AC acted up tonight--oh joy! But luckily, the repairman came out within 2 hours of us calling. We were impressed! So, we are finally cooling off and hoping this heat wave breaks just a bit.

Tuesday, May 17, 2005 9:45 PM CDT

BIG NEWS! Emma blew her Nanny a kiss today! She is discovering a whole new world with her hands, she has realized she can communicate with us (get what she wants!!). It's great to see. I'm going to look up some signs online tonight to try teaching her.

Emma also has begun her soy milk trial. She had 3 oz afternoon, and 5 this evening. So far so good. It would be wonderful is she can tolerate soy. The doctor will keep her on Neocate +1 then just as a nutritional supplement. I guess we'll know within 24-48 hours if she can handle soy. Also, she is defenitely allergic to corn. I bought Gluten-free animal crackers...thinking it was a good idea, part of a sensory diet. Well, dopey me forgot to read that corn flour & corn syrup were in it. She broke out with eczema & even a hive. Good one, mom! Sorry Em! I PROMISE to get better about reading labels. I'm used to looking for milk & soy...

Anyway, we were supposed to have our OT session with the new ECI Occupational Therapist, but they didn't receive a release form from Emma's ENT in time. We'll start next Tuesday. Our Service Coordinator did come out, we had to fill our more paperwork (of course!!), and I gave her all of Em's updates. The ST & Dietician will come out on Friday, and Emma has her next to last private PT (ECI picks her up next week) session tomorrow. The past two weeks, I've been kind of a baby about therapy, our schedule, etc. A little pity party I guess. Anyway, I came across this on the Rett Syndrome website...how fitting!

Love Therapy
by Kathy Hunter

Sometimes it�s hard to keep up with therapy appointments. There are never enough hours in the day to do all that we want to. Don�t get so busy running from one appointment to another that you forget the most important therapy of all, love therapy.

It comes from your heart, your touch, your voice -- all the things that say "I love you just the way you are."

Love therapy is the basis for all other therapies -- acceptance, protection, patience, tolerance and understanding. All of the expensive and complicated therapies in the world cannot work without it.

It starts with recognizing her as an important part of her family, her community, her world, our world.

It wraps her up in the warm embrace of our belief that she is valuable and loved, no matter what she may ever achieve.

It hears her cries and gives comfort, patiently awaits her sunny smiles with joy and tucks her in gently at twilight.

It raises its fists for her when obstacles arise, and cradles her tenderly during long sleepless nights.

Love does not give up in the face of adversity. It grows stronger.

Please especially keep Caden, Emily, and Jenna in your thoughts & prayers. They are sweet little kiddos facing grown-up size battles.

Monday, May 16, 2005 0:19 AM CDT

HAPPY FIRST BIRTHDAY EMMA!!

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Well, belated now! Emma turned ONE on Thursday! Things have been a whirlwind since. Sam ended up getting fleas (gross! never had a dog with fleas before...UGH!), and even after a dip, I started to see them around the house--on Emma's birthday. So, I packed up the girls, and we stayed at a hotel that night with my mom while Josh bombed the house, washed & sprayed Sam, etc. Then on Friday, our exterminators came & finished the job by another spray inside & spraying our yard. YIKES! Thankfully, Sam is flea-free and we are ALL back in our home once again. And...at this point I don't think any bug is living in our house or yard!! Because of Emma's health & sensitivities, we thought it best if she was not at the house at all during this...so we spent her birthday night at the hotel, then Friday night at Josh's parents, and last night (Sat) at Denise's. THANK YOU ALL FOR YOUR HELP!!

So, the past few days have nearly felt like a week! The morning of Emma's birthday was very nice. Here are a few pictures...

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As you can tell, she enjoyed her new presents! I got her 2 Elmo balloons, Elmo plates, and an Elmo figurine to decorate. I didn't want to overwhelm or over-stimulate her and upset her. Madi sang "Happy Birthday" to her softly while I changed her diaper after she woke up. Then we just let her play with her new toys (they were all set up in her new play room). After lunch was when things got nutty--fleas & all! We are going to have her party next Saturday morning at the park.

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Now that we are done with the ear drops, she seems fine since getting the tubes. She was tugging her ears some yesterday, but today she seems okay. We follow-up with the ENT next week. Emma has her one-year well baby check-up on Friday. Because of the surgery last week & all, we are making up some therapy, so beside OT & ST, we're also having Developmental Services come out, plus her PT at Baylor, and the dietician comes out (yey, we get to try soy this week!!). Her schedule sometimes overwhelms me...doctors & therapy...I'm glad she's so young, that she doesn't really understand it all. It is hard on Madi--she gets worried about Emma when she goes to the doctor, and she is very curious about all her therapy.

We got the test results back from the FISH test. It ruled out Deletion 22. So, the geneticist does not need to see us back for 2-3 years. I guess he cannot see any other genetic disorder that Emma may have. Our Neurologist seems pretty sure that she has Rett Syndrome. I found out the results yesterday afternoon on my answering machine (doctor had called on Friday, and no one was home). I was a little bummed. That may seem strange, but I wanted an answer...and therefore a clear plan for Emma. I could at least have a "map" to guide us. Plus, Rett Syndrome frightens me more... Right now, we're not due to see the Neuro until September. I'm not sure if he'll want to do that test for Rett, or just wait. I don't know if I prefer being in the dark about this one, or knowing for sure whether it is RS or not. I keep reminding myself to focus on Emma, her health, not what a diagnosis or label would say, statistics, etc. I'm reading a book by Dr. Greenspan (name escapes me now! Maybe "The Child with Special Needs") and he focuses on the child, not the diagnosis. Every child is different, there is no set path or outcome for any kid, whatever the disorder or conditon might be.

This is turning into a novel...
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I want to share this with you. I can't believe Emma is now one. What a year it has been. From the moment I saw her to now...it's been quite a journey. I remember being so scared in the O.R., she was blue, having trouble breathing. There was so much frenzied energy in that room...I got a few glimpses of her, got to kiss her forehead, and then off they took her. My heart sank when they told us about her heart defects. Those first few weeks home, I barely slept. And then, she just kept getting stronger & stronger, despite anything she was going through, she'd smile & do things HER way. Friends & family compliment Josh & I on our parenting, how well we care for her, how we've advocated for her. I feel like she is the one who has done so much for us. She has taught me so much...I am a very different person today than I was 12 months ago. I thought I knew what patience was before, but it's much more than intently and calmly listening to your three-year old tell you her endless wish list for Santa. Waiting for test results, like echocardiagrams, brain MRI's, EEG's...scary stuff--that's when you learn real patience. I've learned to take deep breaths, to not stare at the clock, to go outside for a walk, even though maybe, possibly it could be the day that the results are back. Emma has taught me to just live in that moment, enjoy every bit of it. I learned different, and better, milestones than the ones you read about in baby books. With Emma, it's become less & less about what she isn't doing, but what she is doing. She's so happy and loving, that's all that matters to me. I've become a huge optimist. When things seem to be going downhill, I've realized it's much better to take a deep breath, and just think positive. Worrying certainly didn't help me, or Emma, or anyone. Besides, with her adorable smile always looking up at me, how could I be pessimistic?

The most powerful thing Emma has taught me is acceptance. I've always been open-minded and a loving person, but I can't say I was always understanding of differently-abled people. Mostly out of ignorance and fear, I think I'd often look the other way. The past few months, I've become educated on so many metabolic, genetic, neurological, and developmental disorders. I guess I'm no longer afraid, because I now understand. In Alabama, while on our ride back home, we stopped at Cracker Barrel. While in their shop, I heard "Never!" I thought a mother was yelling at her child--I was quite shocked. I heard it again. Then I realized this young woman who came in with her mother, she had Tourette's Sydrome. As I browsed the store with the girls, I heard "Never!" several times. We were sitting out front on the big porch when this girl came out. She was talking to herself, shouting once in a while, and clearing her throat. She came over, and in the midst of that, said she had Tourette's. I nodded & smiled. We talk for a few moments. Her mother came out, obviously concerned (I think she lost track of her, she seemed frazzled, but glad to finally see her). She looked at me, with an apologetic smile & asked her daughter what she had been doing. I told her "we'd been chatting." The girl smiled. I told them to have a great day. The mom smiled so warmly...I doubt many people talk to her, much less kindly. I felt so good. I felt so happy that I was not like most others there, turning the other way, whispering. Then the other day at the hospital, I saw this little boy (very little, toddler-age) walking with a walker. He stopped & looked at Emma in her stroller. I waved, he waved back. It took so much effort for him. Emma played shy (flirt!). He would take a step, stop and wave at us, take a step, then wave. His parents were telling him to keep going. I waved and said "Bye bye, cutie pie!" His parents too looked at me with so much happiness. I think a year ago, I'd have felt pity for them, their son. I'd maybe give a quick wave, maybe a sympathetic smile. But now, I saw that little boy, walker & all, for what he was...a cute & sweet little boy. What have I been missing out on? Through those two brief exchanges with people, and a few others, I've been so uplifted. I literally could feel my heart beaming.

Thank you Emma, for all the many gifts you've given me. I know this next year will be full of adventures, and I can't wait!
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Thank you everyone for signing the guestbook. We appreciate it tons. Hope you all have a great week.

Wednesday, May 11, 2005 11:22 AM CDT

Hi! Just a quick update on Emma's tubes. The procedure went well, they removed a lot of fluid & put her tubes in. She did not need to have her adenoids removed (yey!). We arrived at the hospital around 6:30 am, and were out by 9:30 am!! That was good! She did well, a little fussy from the anesthesia & discomfort from the surgery. The worst part is giving her the eardrops, she hates it--I don't blame her! We have 2 more days of drops...ugh!

I spoke to my doctor's office yesterday...so far, no FISH results yet. We should know something within the next 7-10 days.

We are all looking forward to Emma's BIG DAY tomorrow! I'll write more later or tomorrow, it is such a momentous day for all of us. And, I'll post some new pictures soon!

Monday, May 9, 2005 5:18 AM CDT

Well, we are back from vacation! And, I have many updates. We arrived back home around 4:30 pm on Thursday. The girls were SUPER in the car. They now have nearly 2500 miles under their belts!! It was nice in my mom's van--the dvd player and extra space was a lifesaver. Visiting with Cristene & her family was great, THANK YOU GUYS!! We are all looking forward to the beach house! We had a nice visit.

I'll start with some VERY exciting new things Emma started doing (while on vacation!!). Emma can now CLAP HANDS AND GIVE HIGH-FIVE!! She is also really getting good at WAVING and letting us know she wants MORE by patting her hand on the table. She is also trying real hard to get the knack of peek-a-boo!! She has realized that she can communicate with us using her hands, and she is SO proud of herself! I'm sure she is happy knowing she has a bit more control in her world, and can communicate with us. It has been awesome to watch her develop all these new gestures!!

The only down-side to our trip was that Emma had another double ear infection. Poor baby. Despite being on antibiotic (her doctor put her on it, hoping to avoid getting sick while on our trip). My mom & I took her to the children's hospital in Charleston, they were great. She also broke out in terrible eczema--maybe some hives too--on her legs, arms, & hands. We think it was an allergic reaction to a rug. Luckily, it cleared up in a few days as long as we put pants on her to crawl.

We see the ENT this afternoon & as long as her ears look okay, Emma will have her tubes put in tomorrow morning. Should be VERY early, as they schedule the procedures in age order. If he finds a problem with her adenoids, he'll remove them. From what my sisters & friends have told me, it's a pretty easy procedure, and she'll be out quickly. I'm anxious...but I think going through the endoscopies & MRI have me much less worried about anesthesia, etc. Of course, I'm sure I'll still be pretty jittery until she's back in my arms again after surgery!!!

Our ST did a Communication Evaluation, and in addition to her Oral Motor Therapy, we'll start teaching Emma more signs. Next week, we'll also begin (I think) Emma's soy milk trial. It would be GREAT if she can tolerate it. We've decided to make the office into a play/therapy room for Emma. It's been difficult having her share the playroom with Madi (Polly Pockets & all those other teensy toys!!) & now that Emma will have 3-4 visits from ECI/therapists each week, she needs more space. So, we'll have all of her toys, a mat, etc. in the room for her floortime & therapy.

Lastly...we saw the Neurologist before we left. We were scheduled for Monday, but I locked my keys in my car (duh me!). They made an appointment for me on Tuesday. As far as I knew, this was simply a follow-up from last month's visit. We usually don't find out anything, just that he's happy in some areas, concerned in others, etc. We update him on her therapy, progress, etc. Anyway, on the way to the hospital on Tuesday, there was a wreck & traffic came to a standstill. I called the office & they said to still come in, they'd make room for me. My gut was telling me this was going to be a different appointment...and it was. He walked in saying "Rett Syndrome..." My mind kind of blanked out...but, he wanted to test her for it, feeling this may be the answer. He apparently did not receive the info from the geneticist on his testing, etc. So, if her FISH test comes back looking fine, ruling out Deletion22, then we'll do a MECP2 (?) test for Rett. Rett can be degenerative in some forms, so that is a little scarier than Deletion 22...but thankfully, it appears if Emma does have it, it is a milder form. We should get the FISH results back this week. I'll update on Emma's tubes & if/when results are back in.

I can't believe my little Emma will be ONE this week!!! I'm so excited for her birthday, we've picked out some great toys that will be lots of fun & also help her. I'll take pix. Am in the process of planning her party...I do know we're having sno-cones instead of cake for Miss Em!!

Hope everyone had a great Mother's Day. HAVE A GREAT WEEK!

Friday, April 15, 2005 10:35 PM CDT

Well, another busy week has flown by! Several updates here... We are all excited because my parents (Nanny & Grandpa) are in town. It's been nice seeing them! Next week, the girls & I will head to South Carolina with my Mom (Grandpa will fly back up to NJ...for some reason, he doesn't want to drive from TX to SC with 2 kids?!?! Haha!). I am so excited to go. First, because we're going for Megan's Communion, and it was real important for me to be there on her special day. It's a HUGE bonus that we'll get to see Cristene & family, her new home, and maybe the beach! Plus, just not having doctor's appointments, or any other medical-related stuff for about 2 weeks--that is really appealing! We're going to take our time getting out there, no big rush. Hopefully the car ride will go smoothly (Nanny has a nice big van, with DVD player, YEY!). I'm a little anxious for Emma...but it's not like we're traveling out of the country or something! And, Cristene (my sister) has a pediatrician there, etc. But, I am hopeful that that will be one place we do NOT visit while in S.C.

Today, we had three people from ECI out. Emma handled it very well. Our new (actually sub, while our normal one recovers from surgery) Service Coordinator, Amy came. She is VERY nice & I'm looking forward to working with her these next few weeks. Sheila, Emma's Speech Therapist and Kathy the Dietician also were there. It was a little hectic...but we revisited Emma's IFSP to include, going forward: ST 4 x month, OT 4 x month, Nutrition 1 x month, plus Developmental Services 2 x month. I am relieved that the Dietician will be extremely helpful in Emma's transition back to solids, and during our trial with Soy Milk at 12 months. Emma thus far is intolerant to many foods, and allergic (we think) to several. Besides milk & soy, she cannot have corn; so far she can tolerate, apples, bananas, (and now!) avocado, and hamburger meat (I know, that sounds weird, but the ST suggested it, and Emma loves it! We buy the lowest fat-content, organic kind.). So, that's makes trying new foods--especially finger foods--tricky. Kathy will be a huge help & I am really happy about that. Sheila has given us lots of good advice so far too. It's just been a big weight lifted off of me, having Emma's therapists give me lots of ideas and advice that we'd never have gotten from doctors. We are still having a PT evaluation with ECI next week, but Emma is just doing so AMAZING, that I'm sure she won't need any at least for now. She is becoming a little explorer, it is the BEST thing to see how proud she is of herself!

Emma also saw her ENT this week. Her Geneticist had sent us, to get her adenoids examined. After seeing Emma has had 2 double ear infections, an upper resp infection, and eye/sinus infection in the past month or so since we saw him (and came off Gantris), he felt we may need to start thinking about tubes. He sent us for a test (where they put air pressure in her ear...forget the name). After the test, based on the results, her reflux, possible sleep apnea, etc. he felt we need to go ahead with the tubes. He felt it was pointless to wait it out, and see if she gets several more ear infections. We agreed--we'd hate her to keep having these yucky infections, and they certainly do not help her senory issues and speech delay. Emma is scheduled to have the tubes put in on May 10. At that time, the ENT will get a good look at her adenoids, and remove them if need be.

Hopefully the tubes will improve Emma's sleep. Right now, she is only sleeping through the night 1-2 times per week. Most nights, she wakes up screaming & it takes 2-5 hours to get her back to sleep. It is rather draining, to say the least. Some days, she doesn't even nap. It's hard to know what it causing her poor sleep, and whether it's something different each night. So far, the doctors aren't sure if it is: reflux, sleep apnea, ear pain, or sensory-related. Plus, we've been told that fitful sleep and poor sleep patterns are common in kids with developmental delays. I just hope we can at least get to where she is up only 1-2 nights a week, and getting good sleep the rest of the time. Surely, her body needs the rest. And, I would welcome more rest myself!!

We'll see Emma's Neurologist again on Monday. We have lots of good updates for him too, which is nice! Quite a bit has changed, since seeing him a month ago. I'm interested to find out exactly when he wants to do a follow-up EEG & MRI.

Madison & Josh are camping tonight! I'm not sure who was more excited about it! Tomorrow, Grandpa is going to help us make an herb garden, and maybe plant some fruits & veggies too. I'll probably check-in after Emma's neurologist appointment. Then after that, we'll be on vacation-mode!!! I'll be sure & post lots of cute pix of the girls once we get back!!

Thanks again to everyone for coming by. Please sign the guestbook, your entries mean SO much to us!!

Friday, April 8, 2005 9:39 AM CDT

Almost the weekend! Yey! The Arts Festival is going on, so we'll be headed there tomorrow, we are looking forward to it.

Well, our visit with the geneticist was great. I was anticipating being scared by him...figuring he may be like a lot of other "doomsday" doctors. I really like our neurologist too--but some days, he scares me with his "concerns." These type of doctors can be so dry & literal. Anyway, the geneticist, Dr. Wilson, was awesome, he is very kind & may have an answer for us. After taking family history & examining Emma, he thinks she may have DiGeorge Syndrome, also known as Deletion22q11. After researching it last night, Emma does fit quite a lot of its criteria. We'll be going next week to get the FISH test (did not want her getting poked while having these mean ear infections!). It could take 2-4 weeks for the results.

The good news is: should this be her diagnosis, we have the team in place as far as doctors go. She may only need an immunology & endocrinolgy evaluation, maybe some others. But, we already have the main specialists in place. We (and our doctors) are past the point of thinking there may be something wrong...Josh & I have accepted that Emma's medical problems are probably all related. So, to have an answer, that would be great. It really would take a weight off our shoulders. Especially since this genetic disorder (while it is a bit complicated, they are doing lots of research on it, resources are in place, etc.) is a lot less scary than some of the other things they have ruled out & worried about in the past with Em. So, we wait & see.

In a strange, or maybe fateful, coincidence... Children's Hospital of Philadelphia has a special team/dept for Deletion 22q. They have a 3-5 day evaluation program, with a team of specialists who see your child, review chart, & then as a team they create a treatment plan, etc. CHOP is where I had spinal surgery when I was 12. AND...the Orthopedic Surgeon who is part of the Deletion22 team, is MY surgeon. So, if this is Emma's diagnosis and we head to CHOP, it would not be too scary--I (firsthand) know the hospital, doctors, etc. Not to mention CHOP has been rated the No 1 children's hospital & is highly regarded.

HAVE A GREAT WEEKEND!!
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Don't know if I've said it lately...but thank you ALL so much for your support & prayers. I have been so encouraged & inspired. Thank you for signing the guestbook, it makes our day!

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On Monday, we hit McDonald's & the girls played. Madi was ecstatic to be playing with her little sis! This was the first time, and they had a great treehouse for little tots...Emma loved it.

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Is she having a blast--or what?

Wednesday, April 6, 2005 2:28 PM CDT

Emma Crawling More! Image hosted by Photobucket.com

Yes! She's been getting her tummy up & crawling on all fours a bit. She's becoming quite adventurous. She's been able to crawl like that for 30 seconds. It's been awesome to see. Each day she is getting stronger & stronger. GO EMMA!

Emma had her Speech Evaluation with ECI on Tuesday. Sheila, the ST is really nice. Emma will receive Oral Motor Therapy once a week now as well. Her jaw is weak on one side, and she does not have some reflexes on her lips & mouth that she should. Also, her tongue prodrudes (which is why her palette is odd looking, with so many ridges, etc.). So, we'll work on all that, hopefully help her learn to chew, to breathe through her nose (not mouth), and strengthen her jaw & mouth. I'm excited. They are also sending a dietician out to help us adjust Emma's diet as we try to incorporate some solids into her meals.

We had to take Emma back to her pediatrician today. She was up most of last night, her runny nose & congestion are back, and she's pretty fussy. She has another double ear infection. The doctor thinks the infection from last week cleared up, and that this is a second one. Yikes! I spoke to the doctor, & we both are fearing that Emma did so well the past 3 months (as far as colds, etc.) due to the low-dose maintenance antibiotic she was on for her kidney. Since she's come off of it (in ONE month), she's had an upper respiratory infection, and now 2 double ear infections.

The ST also mentioned sleep apnea as being a concern for Emma (mouth breathing, lack of sleep pattern, etc.). The doctor said we'll do a sleep study if the infections continue in the next 2 months. She said that with babies Emma's age, the only thing they can usually do to help sleep apnea is remove adenoids and/or put tubes in. Hopefully, this is the end of infections for Emma. I know having ear infections does not help speech development...and it just stinks having her not feeling good.

We see the geneticist tomorrow. I'm a little nervous...just because going to him (& our neurologist!) can always mean you may hear something scary. They tend to paint a doomsday picture, and it can bring ya down. I am anxious to do see if he has anything to add. I'll update you on that later this week. Image hosted by Photobucket.com

Thursday, March 31, 2005 4:12 PM CST

Hello. Well, it was a hectic 3 days...we're looking forward to doing NOTHING tomorrow!! We got lots of good news this week--so that certainly made it very worth it. Here's the rundown:

Emma's endoscopy went well. There are minimal changes (meaning irritation), but much improvement from 3 months ago. Her sphincter (the first one in your esophagus--I forget the name of it right now!!) is strengthening as well. Yey! So, we just need to continue with meds, and the spit-up she is doing is just a fact of life right now.

On Wednesday, we had the OT evaluation through ECI. That went well. Emma is about 2-3 months delayed on fine motor skills, but their bigger concern is her sensory integration. They trained me on joint compression & deep pressure massage (using the brush), this should help her. She will get OT once a week. I am SO happy to start this, I think it will really be great for Emma. We are hoping the speech (oral motor) evaluation will be next week.

Today we were up & at 'em at 5 am. Yuck. Emma did well with her Upper GI (Mommy almost cried though). They are NO fun...but it was WAY better than the one she had at 4 months & she drank all the barium (go Emma!!). It did show a VERY full stomach, even though she finished her bottle around 5:20 am, and the UGI began at 10 am. That's about all the doctor there told me, also that the pyloric part of her stomach (near where the intestines start) is positioned oddly, so food goes back into her stomach a lot--instead of down into her intestines. I am not sure if her GI doc will push further with motility tests, etc. We are now going to decide if we should head to Cincinnati.

We also had PT today. Emma was SO happy to be there. All giggles. We are having to watch her though--she now enjoys smashing her head into hard things. Other than keeping her from doing that, she was all over the place, looking awesome. Sarah (PT) thinks she'll be crawling (OFFICIAL crawling!) before too long. Uh-oh, big trouble! We cannot wait!!!!!!!

Here's a picture I took with my cell phone a few weeks ago, it's too cute. Please sign the guestbook & let us know how you are doing! Check out Emma's buddy, Caden, he's been a very busy boy lately, doing all sorts of new things! GO CADEN!!!

Have a great weekend!

Monday, March 28, 2005 1:02 PM CST

Happy Monday! We had a great Easter, we spent it with Denise, Julio, Jacqueline, & Tomas. We brought Sam too, and Robie & Kimball (Denise's BIG dogs!) had fun chasing tiny Sam. Everyone had a great time--lots of yummy food too.

We had to take Emma to her pediatrician on Friday, because her temperature was 95.7 - 96.0--weird, huh? The doctor wanted her seen & we're not exactly sure why her temp drops so low (could be neurologically/metabolically related or just her system still needing time to mature). It's just something we need to keep an eye on. She's had issues with temperature regulation since she was born--limbs & torso turning blue, etc. Her feet are cold & blue a lot, sometimes her legs as well. She just likes to keep us (and her doctors!!) guessing!!

Anyway, it's a good thing we brought her in, Emma ended up having a double ear infection, it appears her "eye infection" was really a sinus infection. She hasn't shown any real signs of not feeling good--other than being more sleepy than usual. She is on a new antibiotic and should be all better soon.

We have a hectic week coming up. Tomorrow is her endoscopy & Thursday is her Upper GI. Yuck! Wednesday will be Emma's OT & maybe ST eval(s). Looking forward to that. I hope Tuesday & Thursday fly by.

Here are a few pix from yesterday. We actually forgot to bring our camera over to Denise's (somewhere between the pack & play, booster seat, stroller, bag o' toys, diaper bag, meds, doggie food, dog crate...we forgot the camera!!). So--these are from when we got home last night. Thanks Nanny for the adorable duckie dress!! Take care!

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Friday, March 25, 2005 11:35 AM CST

Newsflash!! Emma Crawling!! Here Comes Trouble!! Emma Crawling!!

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Hi Everyone! Well, yesterday was QUITE a momentous day for ALL of us! Emma showed off her newfound army crawl to us at her grandma's (Honey)house. She was on her mat (we LOVE floor time!!) rolled from her back then was pivoting on her tummy. Next thing I knew, she was scooting her body toward a ball. YEY!!! It was AMAZING to see her mobile!! Josh has been on a business trip all week--so it was great welcome home surprise for him to see her scoot a few inches for him! We hope before too long, she can really get around. We are SO ready for Emma to be trouble--roaming all over the house!!

More good news--she had a great PT session. We are practicing kneeling, standing, and transitions (tummy to sit, sit to stand, etc.). Her trunk still needs strengthenging, but with her arms & legs being so strong, we figured it wouldn't be too long before she started moving. I can't wait to tell Sarah. Emma has really bonded with Sarah & is real comfortable with her (yey!). Yesterday was the first session I was not even on the mat. Emma would look to me here & there, but she let Sarah maneuver her, play with her, etc. That was AWESOME! To think that only weeks ago, she was so miserable & screaming at PT that I dreaded going.

The weather has been SO nice & we are looking forward to Easter. Madi is at an Easter party at her playcare center. She is thrilled!!

We are gearing up for next week. Emma's endoscopy will be on Tuesday, her Upper GI on Thursday, and her OT (Maybe ST as well) Eval on Wednesday.

Have a great weekend and a wonderful Easter. Take care.
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Tuesday, March 22, 2005 12:26 PM CST

Hi! Thanks again to everyone who has signed the guestbook--it's been so wonderful to see greetings from you all. I love the smiles, hugs, prayers, thoughts, and support. Thank you also to those who have emailed me, whether to check in or give me some great advice, I appreciate it all!!

Well, Emma has a double eye infection & cold. Ugh! So, we have eye drops & medicine for her. She looks so sad--poor thing. Because of this, I don't think she'll be having her Upper GI that is scheduled for tomorrow.

After discussing it with Josh, family, and friends, we are going to go do these follow-up procedures her GI wants. This will give us a better picture of things, no matter what. Even if we go to Cincinatti or Philly in the next few months, these tests will still be helpful. If they were more complicated, or I didn't trust this hospital or doctor, I wouldn't do it. I was frustrated the other day after the visit, we just have several tests and procedures each month, it takes its toll. I am very hopeful that the Upper GI will give us a better picture of her delayed gastric emptying, whether it needs further investigation, etc. I'm praying the Endoscopy will show no or less Esophagitis, and we can just continue with our current treatment.

Good news on the therapy front... ECI will do a Speech (Oral Motor) Evaluation, so we won't need to do it via private means. Next week, she'll have her big OT Eval (and maybe ST Eval the same day). Looking forward to that. With 3 weeks of positive PT behind us, I'm excited to see how sensory integration and oral motor therapy can help her. Also, we will see the Geneticist next week for the first time.

Well, Josh was busy hanging blinds, fertilizing the lawn, and more "manly" house details this weekend! He did an AWESOME job on our blinds. Yey--privacy! They look great. The yard is coming along, our sod is finally looking green & after all his work this weekend, we may be the envy of our neighbors before too long! Thank you babe!

Madi is doing good, still running her fevers on & off. She was so happy to play with her cousins this weekend. Thank you Denise for bringing over dinner (and 12 more too!!). It was great having company & the kids loved playing. Madi got to see The Pacifier movie on Saturday with her buddy Lance. Good movie, we had fun! She spent Sunday playing with Reagan & hanging at Honey & Pop's house while Josh & I got out on a dinner date. BIG YEY!! Thanks Honey & Pops for babysitting duty!

Well, if Emma does have her Upper GI this week, I will update the results here. The doctor said if she has fever the morning of the test, we'll have to reschedule. Other than that, we just have PT this week. EASY BREEZY!

Have a great week!!!

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Friday, March 18, 2005 11:47 AM CST

It's Friday, YEY! It has been a long week, and I am looking forward to the weekend. We had a great time at Honey's last night--she made pizza & 2 fabulous cakes (this amazing double chocolate cake & a yummy strawberry one too!). Thank you for my birthday gifts--I have some "going out" clothes now & gift cards for shopping. YEY! Madi had a blast playing with her cousins & Emma was ALL giggles and smiles (that's a record!).

Emma's GI appointment was more frustrating than anything else. He wants to repeat her Upper GI and Endoscopy. I think I am going to seek a second opinion. It is too much to type why I feel this way, and now the insurance company is making things even harder for me. There is only 1 other Ped GI in the area that I can go to, so we'll see what she has to say. I still feel in my heart that Emma can best be served in Cincinnati or Philadelphia. The insurance company said our PCP needs to call for a special authorization for this...which, she will do. It will probably be a challenge though--as we are finding most everything with the insurance company is. Still no word on Neocate coverage. Fingers still crossed on that. I am so thankful we do have insurance, I just wish they wouldn't penalize me for wanting the BEST care for my child.

Enough of that. GOOD NEWS! Emma did SO amazing at PT yesterday! It was JUST what I needed after the GI visit. She was smiling & giggling. Sarah (PT) was able to work with her, maneuver her, etc. She's been warming up to Sarah the past 2 weeks (after 2 sessions of TERRIBLE screaming!), and this was the first week she smiled when Sarah touched her & let Sarah assist her in kneeling, standing, & tummy time. She is lifting up her tummy more & more every day. And, she loves "standing." I have a feeling that one day soon, she'll be crawling around, getting into all sorts of trouble. That would be a WONDERFUL sight!!

Please don't forget to sign the guestbook. All of your kind messages bring us LOTS of smiles, so keep signing!! Also--in the Journal History area, there are some more pictures mixed in from previous entries. Take care!

Brave little Caden comes back from Georgia today. Yey! Check out his page, he got some very hopeful news this week.

Eli�s Angels

Wednesday, March 16, 2005 5:32 PM CST

Hi! Well, it has been a great day. Emma has been full of giggles today. Madi does NOT need glasses. YEY! So, all in all, a good day.

Thank you everyone for signing the guestbook. It's been great hearing from family & friends, and getting to know some really wonderful new friends. Emma has her GI visit tomorrow & PT. Busy little lady that she is! We're also headed to Honey's house for dinner.
Don't forget to wear your green tomorrow!!!!!

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Tuesday, March 15, 2005 10:02 AM CST

Happy Birthday Megan!
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Hope you have a GREAT day & LOTS of fun! We all love ya lots! Miss ya! (((HUGS)))

It is FREEZING here today--in the 40s. It was 91 on Saturday! Well, no OT evaluation today...Madi ran her fever again last night & ECI has strict rules about coming to the house w/ fevers, etc. They wouldn't want to spread germs to other kiddos. I think this is her weird fever, that isn't a cold, etc...but she does have a runny nose. So, they couldn't come. Bummed out--but we'll reschedule, hopefully for later this week or early next.

The girls are BOTH napping right now. The odds of that happening are 1 in a million! Madi is still wiped out & running fever, so she & her pup, Sam, are snuggling & napping together. So cute! I'll keep ya updated later this week with after our doctors' apptointments.

Have a great day!

Monday, March 14, 2005 9:40 AM CST

Happy Monday! Well, as usual with Texas weather...it's changed quite a bit! Still sunny (rain expected on & off this week), but a bit chillier--only 60 today. We enjoyed the 80's & 90's this weekend!! If you missed the picture of our new pup, Sam, check out "Journal History" & you'll see his picture. He is so sweet. We've all been having lots of fun with him.

Madi had one of her high fevers on Saturday night. She was up until midnight. Cuddling with Sam seemed to help. We gave her the Prednisilone the ID doctor prescribed. We hope this will "re-start" the area in her brain that controls fever. She's been very achy lately. She had some eye problems too. So, on Friday, the doctor ordered some tests, just to check on some things. I just want her to feel good.

Emma was up a few times last night. And then from 1:30 am until 2:30 am, then 3:30 am until ??? Not sure... This has been happening every other night or so. Emma had never slept through the night until a couple of weeks ago. Now, it's every second or third night she can get through without waking. Half the time she's fussy, the other half, just up, wanting to play--or be very fidgety. Somehow...she wakes up at 7am SMILING!

I hope she gets her rest tonight--we have our big OT Evaluation with ECI tomorrow morning. We know she will have OT, we need the evaluation to see what areas we need to work on first (sensory integration being one of the top things, for sure). Still not sure when her speech (for her age, more "oral motor") or physcial therapy evaluations (through ECI) will be.

Emma will also see her GI doctor this week. Hopefully we can figure out what the next step is. I contacted a great doctor in Cincinatti that a friend recommended. He emailed me back the next day!! If I still feel like I'm not getting anywhere, I'd like to figure out a way to go up there. Most of Emma's specialists (except for her pediatrician, neurologist, and ENT) don't look at her whole health...they tend to have tunnel vision. This doctor I emailed would plan a team approach--from every subspecialty working together. They also have a motility clinic, that works closely with their neurology department. So, we'll see. I'm going to research this area, and some other hospitals to see what our options are.

If nothing else, at least I know I'm not crazy for wanting Emma's doctors to look at the big picture, and realize how each of her health problems affects the other. At least some other doctor agrees with me! I am so thankful for Emma's pediatrician, Dr. Kincaid. She has been amazing, from day one. So many other parents I speak to...their doctors kept telling them to wait & see how things go (in regards to devlopmental delay). But, we are learning more & more how early detection is critical. Whatever Emma may have, certainly getting help (especially therapies) now will be beneficial.

Wow--that was long! I'll update you later this week, after all our appointments & therapy sessions. Thanks again for all your thoughtfullness, support, & prayers.

Saturday, March 12, 2005 11:28 AM CST

First, let me say THANK YOU to everyone who has visited...wow, I never expected that. Thank you for the kind words in the guestbook. And, thank you most of all for your support & prayers. We all appreciate it more than we could ever express.

Well, we did it! We got a puppy. He's a miniature schnauzer, 7 weeks old, and TOO cute!! Madi named him Sam (which suits him perfectly!!). We have all had a good time getting to know eachother. Since Bogie, we've been waiting until the right time to get a new doggie...and this seemed like a great time. In all honestly, training a pup, teaching him tricks, and finding he's chewed on my shoes...well, all of that will be a welcome distraction to everything else we have going on!! I think he'll be great for all of us.
Here is is!! SAM!
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Three beautiful days in a row--we are spoiled! It is going to get up to 84 today--not a cloud in the sky. We spent the morning at the park--all FIVE (lol!) of us. Emma loved swinging & going down the slide with Daddy. Madi's favorite was the "tater totter" as she lovingly calls it. Even Sam got in on the action...following Madi through tunnels & swinging with me. We all had a blast. We didn't bring the camera--we wanted strictly PLAY time! We'll take some pix at the park tomorrow to share.

Please visit Emma's buddy, Caden's page . He's adorable & is preparing for a big trip to Georgia next week. Please keep him & his family in your prayers. His mom has been a great friend & wonderful source of strength & advice these past few months (she's also how I learned about these webpages!!).

Thursday, March 10, 2005 4:22 PM CST

Well, I have a NEW nephew!!! Carla gave birth to a 7lb, 9 1/2 oz, 20 in baby BOY at 3:15pm this afternoon!! I hear it was a quick delivery--YEY!! Congrats to Carla, Scott, & BIG BRO Joseph!!!! Miss you guys tons & can't wait to meet the little guy!!!

Emma had PT today. She did well with it, got a little overwhelmed at times, but Sarah (her PT) was SO happy to get a few smiles from her!! Emma was able to prop herself up off her belly for FOUR seconds!!!! GO EMMA!! We are making progress on standing (assisted) as well. Looking good!!

It is another gorgeous day today. The girls & I spent some time outside. Josh is working from home tomorrow! YEY! So, we'll all get a nice 3-day weekend together.

Please visit Emma's buddy, Caden's page. He's adorable & is preparing for a big trip to Georgia next week. Please keep him & his family in his prayers. His mom has been a great friend & wonderful source of strength & advice these past few months (she's also how I learned about these webpages!!).

TAKE CARE!!!

Wednesday, March 9, 2005 10:55 AM CST

Spring is upon us! In Texas, at least. I know it's snowing in the Northeast this week...but it's been 70 here, sun shining! Madi is looking forward to planting flowers, chasing butterflies, and enjoying her backyard!

We have all been fighting a cold (I think everyone else is too!!), so that's no fun. But, once we are all feeling better, we are looking forward to taking some nice walks in this weather, and visiting the park.

We are anxiously awaiting the arrival of Joseph's baby brother. So exciting!

I'm still playing around with this site--adding pictures, etc. I'm going to try & update it as much as possible--weekly at least. Things change with Emma so much!! This will help me keep everyone up-to-date. It is hard to call or email everyone, so this way, you can check-up on us whenever you like.

HAVE A GREAT DAY!

Wednesday, March 9, 2005 10:42 AM CST

You all are probably wondering about Big Sis Madi! Well, she is now 4 (going on 14!! LOL!) and brings so much sunshine & laughter into our lives. She is very precocious, loves to dance, and depending on the day, wants to be a movie star, cheerleader, fire fighter, or detective when she grows up!! She is the sweetest Big Sis, loves to play with and give hugs to Emma. Emma loves Madi, gives her the biggest, toothless grins! Quite a bond has formed between the two--it is amazing.

Lately, Madi is excited at the idea she may need glasses. She failed her vision screening at her well-visit last month, so she�ll see an eye doctor next week. I keep telling her she probably won�t get glasses, but she is hoping she does. �Until she needs them, I�m sure! This is the same child who wants desperately to lose a tooth (so she can be JUST like her big cousin, Jacqueline!). What a crack-up!!!

Madi has had her fair share of doctor visits the past few months. She was hospitalized for four days last fall. After many doctor's appointments, tests, etc. we were referred to an Infectious Disease doctor. He is great ("very kind" as Madi says). We think that Madi has a syndrome called PFAPA, which causes her to have high, uncontrollable fevers every 30-60 days. The area of her brain that controls temperature malfunctions, and causes this fever--for no good reason. Her next bout, we are to give her Prednisilone, hopefully this will "re-start" that area of her brain, and these fevers will go away. She also gets mouth sores, sensitivity to sound & light, and stomach aches with PFAPA.

As if that were not enough, she is chronically constipated. For this, she is given Miralax, a daily laxative. She also gets aches & pains, red joints, and stomach pains. The doctors feel she has an auto-immune condition, probably Irritable Bowel Disease (Ulcerative Colitis or Crohn's) or Juvenile Rheumatoid Arthritis. There is nothing we can do for now--just help her as best we can with her symptoms. The disease, whichever it might be, may not fully present for a few years.

We are now working hard to figure out a way to keep her feeling good--and improving her quality of life. No four year old should not be able to get out of bed in the morning because their legs and feet hurt so badly. Heartbreaking, to say the least. She is so full of life and has such great self-esteem, I don't want that to change.

Wednesday, March 9, 2005 10:41 AM CST

Emma was born on May 12, 2004. We had planned a repeat c-section for the end of May, but Emma had other plans. She decided to meet us 3 weeks early! She struggled a bit when she first came out, they gave her oxygen & she spent 6 hours in the nursery before we could see her.

She took to nursing in no time. She had quite a head of hair!! She resembled Madison a lot, but we also saw a bit more of Josh in her cute little face. We truly were blessed to have TWO beautiful little girls in our family.

The second day in the hospital, we found out that Emma had a murmur, and subsequently that she had 2 holes in her heart. A PDA & ASD. The diagnosis of Congenital Heart Disease proved to be much scarier than the actual state of Emma�s heart. She is quite a fighter, we have since learned!! She also developed jaundice in the hospital & by the time we were home 2 days, she needed phototherapy. She was a quiet baby, very sweet.

At 6 weeks, we followed up with the Cardiologist & found out her PDA closed. YEY! The ASD was still open, and she still had the murmur. We were in the clear, except that we have to be vigilant if she shows signs of strep, or other bacterial infections. When she is older & gets dental work, she will need antibiotics. We are hoping that by her next cardiology follow-up, the ASD will be gone too. She�ll probably always have a murmur, and this may worsen if she is sick, but other than that, her heart is A-OK!! What a huge sigh of relief...

In the coming weeks, Emma's tummy troubles escalated. We'd gone to the pediatrician nearly every week for gas, bm issues, etc. It was to the point where she was screaming in pain, pulling her legs up, miserable. We held her all day & night. We eventually saw a Pediatric Gastroenterologist. He determined she had Milk Soy Protein Intolerance (MSPI), and we started feeding her Neocate (a very expensive formula which contains no dairy or soy, it is hydrosylate based). What a difference it made! Things were finally back on track. She spit up some, but nothing too bad. We were starting to leave the house again. LOL! That was at 4 months.

At Emma's 6 month well-visit, the doctor mentioned she was "Developmentally Delayed." At six months, Emma was not rolling over or sitting with support. She was very floppy & seemed disconnected most of the time. She did not engage in toys, had no interest in helping feed herself, etc. I guess in my heart, I knew Emma was different. But, with her tummy problems & being a little early, I dismissed everything. To hear a doctor announce it, hit me fairly hard. The next 2 weeks, Josh & I discussed our concerns and made a follow-up with our pediatrician.

What concerned us more than the fact that Emma wasn't rolling or meeting other milestones, was what she WAS doing. Things like flapping her arms uncontrollably, seemingly unaware of it. Her head had dropped several times, once hitting the highchair tray. When we'd attempt to prop her up to "sit," she'd slump, never offering a hand to support herself. She wasn't babbling much, in fact at 4 months she talked way more...by 6 months, she was practically silent. At times she would tense her arms, bringing them into her sides, with arms bent & making fists with her hands. She would scream if we tried to straighten her arms. Placing an object in her left hand would cause it to flail up & down, uncontrollably. She was still startling, the way a newborn does.

Our pediatrician gave us a referral to a neurologist & ordered an MRI as well as some bloodwork. The MRI & blood tests came back normal & we finally saw the neurologist when Emma was 8 months old. That appointment was probably the scariest of them all�we were hoping & expecting him to call Josh & I neurotic parents & to go home, relax, and play with our healthy child. That did not happen. Instead, he told us there was definite reason for concern, based on what she was doing & the milestones she was not reaching. He remarked that she was very floppy. Our first steps were to rule out a progressive disorder over a static one. Progressive being on that would get worse, she would lose learned skills, etc. A static one is one in which she would make slow progress, on her own time, but she would progress (at least to some point). He also wanted to rule out seizures for her �head drops� and �staring.� She�s �lost� neck control a few times, once even hitting her high chair tray. There are other times where she zones out, into outer space�you can call her name, dance in front of her, hold toys up, etc. and get no reaction. Then, after some time, she is back there again, her normal self. Needless to say, we left that appointment quite upset.

The neurologist ordered an EEG, bloodwork, and urine tests. The EEG results did not show any seizures (which does NOT rule them out, he said people w/ known epilepsy will have a normal EEG 40% of the time), but it did show a slower brain wave rhythm. That was scary to hear, but the doctor said it is a �non-specific� finding, meaning it does mean the brain is not working properly, but where or why is unknown. He also said this could change and improve with the next EEG. Thus far, the multiple blood & urine tests that have been done (to find or rule out a Metabolic Disorder) have come back negative.
We returned to the neurologist in February. We were concerned about Emma�s arm/hand/leg flapping, and how she puts her head down a lot and tucks her chin in (like she�s trying to go inside of herself). He said they are all related to her developmental delay, as is her odd posture of locking in her arms & hands. He is happy she is making some progress (i.e. sitting!!), but said her mannerisms, postures, etc. are still a concern. Basically, he prepared us for the fact that (thankfully) Emma will make progress, but it will be at her pace. She'll more than likely always be behind, but at least there will be progression. He is almost positive what she has is a static disorder, not a progressive (degenerative) one. Big sigh of relief!! We are still awaiting some of the metabolic studies. We will see him back again in April, Emma will be 11 months. We'll repeat her EEG & MRI sometime after 12 mos. He wants us to see a Geneticist to rule out a Genetic Disorder, and also ordered a Speech Evaluation.

During all this, Emma was also diagnosed as having an enlarged kidney. This showed up on my 20 week Level II sonogram, but once we moved, this same type of sonogram was not done. Emma ended up having a kidney infection in December. Through several tests, we have confirmed she has Hydronephrosis (enlarged kidney), but thus far no sign of bladder or kidney reflux. We will follow-up with the Urologist in September. If at that time her kidney is still enlarged, he will order more invasive tests. We are hoping between now and then whatever is causing the blockage (and then enlargement) of her kidney will go away & her kidney will cure itself. We also need to rule out damage done by the infection she had. Thankfully, she is off the antibiotic she�d been on for 3 months! YEY!!
Emma has also had many feeding and digestive problems as well. Her reflux worsened in December and January. She was spitting up a lot, gagging, choking, and had a runny nose or congestion most of the time. Some bottles took her an hour to take. Her daily intake of Neocate was 12 ounces (not enough!). She began losing weight. We were prescribed Prevacid to help her reflux. This helped a little, but her feeding problems still continued. We switched bottles, opting for a softer nipple. This seemed to help, she was more agreeable with eating. But, problems still occurred. Her Gastroenterologist ordered an Endoscopy and pH Probe in January. The Endoscopy showed Esophagitis (chronic inflammation of the esophagus) and a weak sphincter. The pH Probe showed significant GER episodes, some lasting for prolonged periods (the pH Probe measures the level of acidity you spit-up, and how long it stays in your esophagus, it is a 24 hour test). We tried one medication, Carafate, but this bothered Emma�s stomach. We then tried Bethanacol, this helped her reflux some. She is not a candidate for surgery at this point, because if she does have a Metabolic Disorder, the surgery will not help & it could actually lead to her retching uncontrollably. Obviously, that is not something anyone wants. So, we are hopeful we can take other steps to help her esophagus heal and control her reflux.
The past few weeks, however, she is spitting up again, sometimes projectile, she is still gagging, choking, etc. She also has very sour burps & her breath is foul at times. Her reflux worsens with solids. So, with her pediatrician�s okay, we removed most solids from her diet. We spoon-feed her oatmeal twice a day, the rest of her food is Neocate, thickened with cereal. This has helped somewhat, but I still feel something else is wrong with her GI tract. She cannot tolerate any foods other than apples and bananas (anything else either causes worsened reflux, severe gas and pain, or eczema). She is intolerant of dairy still, and corn as well. We are still hoping & praying she can outgrow these sensitivities� Anyway, last week, during her kidney sonogram, the sonographer remarked about how full her stomach was. She hadn�t eaten for 2 � hours (and her breakfast was very small that morning). This confirmed what I�d been suspecting�either a motility problem or delayed gastric emptying. We will see the Gastroenterologist March 17th, and see where to go from here.
We saw a great ENT last week (our first ENT was a bit nutty!!). WE think Emma cannot process high-pitched noises. The ENT said that her ear functions normally (i.e. the ear drum, etc. all can hear), but that we can�t tell how her brain processes the information. In a few months, we can do an ABR test�she�ll be sedated for this, so we are waiting a little longer for it. This will give us a better idea of what she can hear, how her brain reacts to it. Her brain may not process sound properly, either because of a neurological malfunction, an auditory processing disorder, or due to her Sensory Integration Dysfunction. Some sounds may be too much for her, so she blocks them out�or she hears EVERY sound, and therefore cannot disseminate between them.
Our busy Emma also started Physical Therapy at Baylor Our Children�s House. Her therapist, Sarah, is great. We have set forth goals for Emma to achieve, such as supporting herself on all fours, crawling, standing with support, etc. The first few visits were hard for Emma, she screamed through them. But, our last visit went very well, she is making progress. She can now sit unsupported, roll over, pivot while on her tummy, and is starting to �army crawl.� We are amazed at the progress she has made in only 4 months�at six months, she couldn�t roll over or sit!!!
Emma is also enrolled in the Early Childhood Intervention program. This enables us to get additional therapy through a state-funded program. We pay for it, but it is much less than private therapy. They are also a great resource for assisting us with finding respite care, support groups, etc. Emma will start Occupational Therapy next week with Liz. Liz is great, and I know she will help us a lot. Liz has identified Emma has having Sensory Integration issues. This is something Josh & I have suspected for a month or so now. Emma has never been able to tolerate loud noise, large groups of people, etc. We are still finding out information about Sensory Integration Dysfunction, and the best way(s) to help Emma feel comfortable wherever she is.

Emma has taught us an invaluable gift�PATIENCE. Every parent must be patient, and I thought I was until Miss Emma came along. We cherish every moment, every �small� accomplishment. We try not to wonder what could be wrong, and just enjoy today. Our biggest challenge right now is getting Emma�s Neocate covered. Her medical expenses sure add up quickly! On average, we have 1-2 doctors� appointments per week, and therapy twice a week. Our pediatrician is writing a letter in hopes of getting our Neocate covered. We are praying it will be covered--especially because the pediatrician & GI have both said Emma will be on Neocate well after her first birthday.

Wednesday, March 9, 2005 9:36 AM CST

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