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Tuesday, May 6, 2008 5:08 PM CDT

Before I forget, I started a blog for our family: http://themarkhams.blogspot.com/

I will update there more frequently, on all that's going on with the family (and of course, plenty of updates about Emma!). I looked into it, and Blogger is easier to post, I can write entries from my Blackberry, and it's easier to put pictures on. I'm going to keep the CB page up and running. It's neat to read, and to see the pix of Emma & how much she's grown. I may continue to update medical stuff here as well. We'll see.

Emma saw the neurologist on Friday. He went over the different medications (seizure), and we decided to try Keppra. It will take 4 weeks to get to the full dose. So long as all goes well, on week 5, we'll begin to wean her off of Trileptal. We're hoping this will give her better seizure coverage--so that even when she's sick, she won't seize. Her Trileptal was very high (42) following the last one, so her dose cannot be increased. Her sleep issues are back--which good be a sign of some seizure activity OR just normal for Emma (common in kids w/ same issues). Please pray that this transition goes smoothly, no side effects, & that the medicine is effective. I'm posting some pix up on the blog. Thanks for stopping by! :)

Wednesday, March 26, 2008 12:34 AM CDT

Oops! Sorry about the password deal. I was testing it, to see what it looked like & all. Then, I forgot to take it off, and it's been hectic here.

The girls had a nice spring break, they were able to see lots of their cousins and have fun. We took a trip to Glen Rose, TX--where they have dinosaur tracks & a cool dino world. Both girls had a blast, it was fun & relaxing.

They saw the GI doctor last week. Madi got a GREAT report--we had her off of dairy for about a week prior to her appt, and the doc could feel a difference in her abdomen. It's not swollen or tender anymore. So, it appears dairy was causing all of her issues. She is off of miralax (yey!) AND in June, we can take her off prevacid and see how she does (WOOHOO!). She'll be on a dairy-free diet for 2-3 years, that should fix her tummy troubles for good.

Emma didn't have any big news from her appointment. Doc says her developmental delays & sensory issues are affecting her eating/drinking, and there's nothing more we can do to move her along. It's going to take time, and development on Em's part before she's able to eat and drink appropriately. The gtube is now more of a long-term thing than short-term. After the last few colds, Josh & I are okay with that. She doesn't drink even a sip, which would mean for even a common cold, she'd be in the hospital for dehydration.

We'll see the neurologist next month, and that's about it for appointments other than therapy. What a treat, to not be constantly scheduling appointments and seeing doctors!! Emma has come so far! She is loving school, and doing really well. We're all happy about the warmer weather and spending time outdoors.

I'll try & update her page with some new pix soon. Can you believe Em will be 4 in a month and a half???

Sunday, March 2, 2008 4:58 PM CST

Poor Emma's had a rough couple of days. She had a big seizure on Wednesday night. I kept her home school because she was running a low fever, she was resting on the couch. I was sitting next to her, and I saw her start to stare at the back of the couch, then her nose (from my angle), then her head started to turn into the pillow and the shaking started. I laid her flat on her back and it was a pretty bad one like the others last winter. Thankfully, Josh was home and was able to help. Unfortunately, Madi saw it and it really has bothered her (understandably).

The doctor's office was open late, so we were able to take her in. They watched her for a few hours, ran tons of tests on her, and it all looked viral. Josh's parents kept Madi overnight, and thankfully she met with her guidance counselor. That seemed to help, she's brought it up a few times and we've been reassuring. She's still a bit jumpy if Emma makes an odd sound or anything. Madi's such a sensitive kid, and we are all blessed to have her as Emma's big sis.

Yesterday, Emma's symptom-less virus turned into croup. It's really nasty. She's been a champ about her breathing treatments, runny nose, and cough. She feels miserable, and all that stuff just really adds to it, especially with her sensory issues. Hopefully it will pass quickly, she really misses school.

Have a good week.

Friday, February 22, 2008 2:43 PM CST

Emma, the Oscar winner!

For the last 2 months, we have been working with Emma on drinking from an open cup. According to her IEP progress reports, she is doing this (with minimal spillage) about 70% of the time. Yet, at home, she refuses, tantrums over it, and if she does drink, she chokes. Her teacher made her a great chart for home, to get prizes for open-cup drinking, and it's still been a very stressful event. None of us understood why she was doing it fine at school, and not at home.

At OT yesterday, I asked her therapist for any ideas. She brought in a cup, saw Emma's reaction (upset), & observed her drinking (well, letting liquid fall out of her mouth or choking). She feels Em is still having the same oral motor issues (delayed swallow, aspiration, & oral motor coordination issues). She figured Emma wasn't really drinking at school, or barely sipping. And that she wasn't having meltdowns at school thanks to peer pressure with her classmates.

So I spoke with her teacher this morning. When I picked Emma up, her teacher & aide said they marked the cup & closely watched her. Emma does all the motions (which is good), brings cup up to mouth, even say "ah" after some "sips." Well, she is only getting her lips wet, not actually drinking any. They spoke to her, she fussed a bunch, and when she did finally take a little sip to swallow, she choked. They couldn't believe she had them fooled for this long. What a smart cookie, eh?? And here I thought Madi was the only actress here!!!

The good news is that we're not crazy & there's more to Em not using an open cup at home. That was a relief--Josh & I never realized how stressful getting your child to drink from an open cup could be! The bad news is, of course, the oral motor issues Emma still has. So, her OT will work more on them, as I'm sure her ST will when we speak next. We'll also try faster-flow sippy cups & thicken her juice. I feel bad that we've been pushing her to do something that must be pretty scary & uncomfortable for her to do.

Great news: Emma scored 2 standard deviations ABOVE for her comprehension & she scored high for her expression too! WOW!! We are so proud & amazed. Next we have her articulation evaluation, and that's where she has difficulty along with social communication. She's doing so awesome!!

Big Sister Madi had her endoscopy...what a brave girl! She did great, the center we brought her to was so wonderful. The initial report looks good, we are awaiting biopsy results. If all is okay, she'll remain on her current meds because that means they're working. I think we're going to try the GFCF diet with her.

Have a great weekend! We have an all-girls cousins sleepover this weekend for Madi's birthday (she was 7 on 2/12...wow time flies!).

Tuesday, February 5, 2008 4:39 PM CST

Sick again here! Madi came down with the flu on Thursday, she had very high fevers, and has never looked so bad. I was able to get an 8:30pm (thank goodness for late office hours--I love our docs!!) appt for her. The nurse had never seen a flu shot turn positive so quickly! I felt so bad for her, she was miserable. We started her on Tamiflu, and then some meds for vomiting. She was actually back at school today. She recovered QUICK!!

Now, Emma has it. Luckily, our doctor had given us the Tamiflu prescription, so we had it here ready to go. She slept literally all day yesterday. Today, she's been very hyper, pretty much in her own world, talking to herself, etc. She's having a hard time of it, that's for sure. We had a short seizure scare yesterday, she was sucking in her sleep a lot, and then was very hard to awaken. She finally did respond, and then fell back asleep. So, I'm not sure what was going on, but nothing like that has happened since. I think with the Tamiflu & gtube feeds of pedialyte (we are giving her fluids nearly round the clock), she'll be okay and feeling back to her usual self soon.

I have bronchitis, but I think a touch of the flu too. Some fever & aches, very tired. Things I never have had w/ bronchitis. Josh is feeling achy, dizzy, & tired today as well. So, we're all just doing the best we can!!!

Please keep Emma in your prayers, that she feels better & stays seizure-free. Also, please keep our friends Dylan & Samantha in your prayers, they are friends of ours who also have the flu. Dylan is only 4 months old, and Sammie is our friend who overcame leukemia (she is 3). This winter has been a tough one, looking forward to spring!!

One more thing...Madi was scheduled to have an endoscopy this Thursday, we've had to cancel because of all the illness. She'll probably have it the week after next (2/12 is her birthday--she'll be 7!!). Her reflux continues, despite medication, and she has been clearing her throat all the time. The GI doc wants to rule out anything serious going on in her esophagus, anything in her tummy, and biopsy to rule out if she has some type of allergy sensitivity, etc. We think her reflux is to blame for her pneumonia, sinus & ear infections (last one she perforated her ear), etc. Once we get those results, we can see what more we may need to do. I think I will try a special diet, like gluten-casein free or something. Between her GI issues, eczema, sleep issues, I'm ready to try anything!!! I'd love Emma to try the GFCF diet, but her diet is SOOO limited right now, that I have no idea what she would even eat on it. We'll see... Any great ideas for kids who eat only fast food chicken nuggets, fries, and fruit chewies, please feel free to email me GFCF ideas!! markhamfamily@gmail.com

THANKS!!!

Tuesday, January 8, 2008 10:23 PM CST

HAPPY NEW YEAR!

We hope everyone had a wonderful holiday season. We did, despite lots of illness. We all recovered from our Thanksgiving bug, and then I had bronchitis again 2 weeks before Christmas. That was no fun, but I was sure glad I had my shopping done so early this year!! Things were a blur getting ready for Christmas, and then the girls got sick...so I'm sorry I haven't updated.

Emma got sick a few days before Christmas, she had an awful bug. High fevers, severe congestion, and just plain miserable. The good news is we were able to keep her home & hydrated via her gtube AND she didn't have any big seizures. It looked like she might have had a couple of small ones during the high fevers, but nothing like we've seen with her last 2 big fevers. So, that means the new dose of medicine is doing its job!! :) Poor Emma was sick during Christmas, but she still enjoyed her new presents. Just as she was feeling better, Madi caught the bug. They even thought she may have mono. Finally, both girls are healthy again. They are back at school, and our life is settling back into its routine.

My mom is visiting, and that's been fun. My birthday (the big 3-0) is tomorrow. Madi is so very excited, Emma just really hopes I have cupcakes (a fave of hers!). I'll try & post some recent pix of the girls soon.

BIG NEWS!! Emma is able to drink from an open cup!! She is working on it each day, a few sips & she gets a sticker for a special chart her teacher (her awesome teacher!) made. She also does it at school during snack time! Next, we're hoping we can start with potty time!!

MORE BIG NEWS!! Emma ate (like chewed & swallowed!) 3 bites of hamburger at feeding therapy last week!! She seems to enjoy going, after she takes a bite (or licks or kisses the food, if its a new one), she gets bubbles blown & some cheers from the ST. Seems to work. We are SO proud of her!!

OT is doing great, she loves going there and we are learning so much about how her sensory issues affect so much. Speech is going good too.

As promised, here is the first video I made (a while back!) of Emma chatting with me. This was taken in October. She's blossomed even since then. School has helped her so much! I will take some more video and post. I have one or two more of our chats from Oct & Nov that I'll post on here too. Figured those who haven't seen Emma in a long time, or have never heard her talk away, would get a kick out of this.

Make an on-line slide show at www.OneTrueMedia.com

Tuesday, January 8, 2008 9:45 PM CST

HAPPY NEW YEAR!

We hope everyone had a wonderful holiday season. We did, despite lots of illness. We all recovered from our Thanksgiving bug, and then I had bronchitis again 2 weeks before Christmas. That was no fun, but I was sure glad I had my shopping done so early this year!! Things were a blur getting ready for Christmas, and then the girls got sick...so I'm sorry I haven't updated.

Emma got sick a few days before Christmas, she had an awful bug. High fevers, severe congestion, and just plain miserable. The good news is we were able to keep her home & hydrated via her gtube AND she didn't have any big seizures. It looked like she might have had a couple of small ones during the high fevers, but nothing like we've seen with her last 2 big fevers. So, that means the new dose of medicine is doing its job!! :) Poor Emma was sick during Christmas, but she still enjoyed her new presents. Just as she was feeling better, Madi caught the bug. They even thought she may have mono. Finally, both girls are healthy again. They are back at school, and our life is settling back into its routine.

My mom is visiting, and that's been fun. My birthday (the big 3-0) is tomorrow. Madi is so very excited, Emma just really hopes I have cupcakes (a fave of hers!). I'll try & post some recent pix of the girls soon.

BIG NEWS!! Emma is able to drink from an open cup!! She is working on it each day, a few sips & she gets a sticker for a special chart her teacher (her awesome teacher!) made. She also does it at school during snack time! Next, we're hoping we can start with potty time!!

MORE BIG NEWS!! Emma ate (like chewed & swallowed!) 3 bites of hamburger at feeding therapy last week!! She seems to enjoy going, after she takes a bite (or licks or kisses the food, if its a new one), she gets bubbles blown & some cheers from the ST. Seems to work. We are SO proud of her!!

OT is doing great, she loves going there and we are learning so much about how her sensory issues affect so much. Speech is going good too.

As promised, here is the first video I made (a while back!) of Emma chatting with me. This was taken in October. She's blossomed even since then. School has helped her so much! I will take some more video and post. I have one or two more of our chats from Oct & Nov that I'll post on here too. Figured those who haven't seen Emma in a long time, or have never heard her talk away, would get a kick out of this.


Conversations With Emma Part I


Take care!

Wednesday, December 5, 2007 10:11 AM CST

Wow, it's been so long again! We've been busy here, gearing up for Christmas and all the school functions. Girls are doing okay. Over Thanksgiving break, Emma had bronchitis & Madi had pneumonia. Yesterday, they both started coughing again. Madi is home sick today, as she also has fever. Everyone we know, it seems, has been sick here. There's lots of nasty stuff going around. Thus far, I've managed to get a lot of Christmas shopping done online, avoiding the mall!!

The girls saw the GI doctor just before Thanksgiving. He's pleased with Emma's growth (50or weight, 20eight--it's AWESOME to have her pretty close to average on there!!!). We are able to decrease her Neocate Jr. tube feeds by a bit, so that's good! We're having to try new doses of Madi's tummy meds, as her constipation & pain is worse. He is concerned about this throat-clearing she is doing. But, she has such bad allergies, it could just be that, and not reflux-related. If she has a lot of respiratory issues or the throat-clearing gets worse, etc., then he wants to pinpoint what is going on with her reflux.

Emma has began group feeding therapy. She did GREAT on her first visit...of course, we served her favorite (um, only!) food, chicken nuggets plus some crackers & peaches. It is her with two boys, then each take a bite and then get much praise & bubbles from the speech therapist. The ST is really nice, & Emma did great, despite it being a new place with new people. We've been talking to her about it, and I told her it was (her regular ST) Christin's friend. This week, it really starts for her--we bring 2 foods she eats/likes and one she doesn't. We'll also work on drinking with a straw & then an open cup, and other beverages. I'm SO excited to think she may start to eat something other than chicken nuggets and apple juice!

We also have a new OT. The center & the OT is fabulous. Emma is doing great with most fine-motor tasks. She does have some issues due to her tremor, but she powers through it anyway! She has a hard time with things like turning a door knob, and any tasks that involve her body (like dressing/undressing, feeding, etc.)--this is more due to her sensory issues. She's having a LOT of sensory issues, more than she did 6 months ago. So, OT will address those, help us out at home, work more on her low-tone, reflexes, etc. She too observed less strength on one side, what Emma's PT has also noticed in the past. I guess this is just something Em may always have? The report the OT gave us was SO thorough, I understand sensory processing better than I ever have. We're really hoping if we can help Em's sensory issues, her meltdowns will ease up a bit. I can't imagine having to process things the way she does, simple things I take for granted, have such an effect on her. So, I really hope we can help her out more.

Emma has some new tics (possibly dystonia or other movement disorder), which the neuro said is all just part of her static encephalopathy. She does some eye-blinking & grimacing, also some vocal & rubbing movements that may be tics or sensory (stimming). Leave it to our Emma, though, to have a really adorable tic: she will walk & kick her right leg up to the side, touching her right knee to her left one, with her foot way up in the air. A few months ago, when it began, I thought she was doing a dance step or something. But, then it continued & we realized it was unintentional. Sometimes she will do it between every step. When people see it, they smile & think it's cute--so we're grateful she is getting positive attention for it!!!

The girls are both doing great in school. Josh & I are doing really well too, we're excited for Christmas--it's always neat to see this time of year through the girls' eyes. I promise to post some Emma videos SOON! Life here is hectic but good!

Thanks for coming by.

Friday, October 19, 2007 9:02 AM CDT

Happy Friday!

I'll be adding some cute pictures this weekend and a new video montage. You'll get to see Emma in action & some talking too. Emma's class & families met at a pumpkin patch last night--so much fun! All the kids just had a blast, and it was really great to hang out with all the families.

Josh gets in from Canada tonight, the girls will be HAPPY to see him!! We're going to have some good family time this weekend.

PLEASE check out this link:

Wandering Persons Alert

I have signed the petition. So many autistic children & people go missing, and all too often, they are not found alive. Part of the problem is proper training for rescue teams, although most communities have now trained their public agencies on better ways to handle these situations. The other major part that hinders these search & rescue efforts are the lack of public awareness. Because Amber Alerts are only for kidnapping, they are not used when children/people with autism or other developmental disabilities go missing. If an alert existed, I think two things would happen to help: more volunteers would join the search early on and the public would become more aware of how frequently this occurs.

This is GREAT news!!!!

Autistic Hiker Back With Family in W.Va.

By VICKI SMITH and KELLEY SCHOONOVER – 2 hours ago

MORGANTOWN, W.Va. (AP) — A missing autistic hiker found underneath an umbrella of dense brush in the wilderness was doing well at a hospital Friday, his family said, asking for food and smiling at relatives who came to visit him.

Jacob Allen, 18, was discovered Thursday sleeping under a thicket of laurel in the Dolly Sods Wilderness Area, part of the Monongahela National Forest. He had survived four cold days and four nearly freezing nights.

His mother, Karen Allen, spent the night in the hospital, keeping watch over her son.

"He was alert, asking for food and wanted to get out of bed and walk around," she told NBC's "Today" on Friday.

It was the wilderness — a cascade of mountain laurel and rhododendron flowing over loose rock and steep cliffs — that posed the greatest danger to Allen while he was lost. But in the end, it was the one thing that kept him safe.

Though Allen was less than a mile from the spot where searchers had found his hat Monday, the brush kept his location hidden until Thursday afternoon. State Police 1st Sgt. Jim Wise said he believes it also may have kept the teen from wandering toward 20- to 30-foot cliffs.

"It made sort of like an umbrella, but underneath it was bare and open," Wise said. "It made some type of shelter."

Allen opened his eyes, then rolled over to meet his rescuers when Jeremy Reneau called his name.

"He was very quiet," said Reneau, 25, the first to spot Allen. "But you could tell by his body language he was hungry."

After a quick meal of candy bars and peanut butter sandwiches, Allen tried to walk with rescuers but tired quickly. Reneau, Wise and others carried him on a litter to a trailhead where 50 people, including his parents, awaited.

"There were tears. There was clapping. I was crying. Other people were crying," said Tiffany Curran, a volunteer firefighter.

Allen was in good condition at Davis Memorial Hospital in Elkins, where officials said he remained under observation. His parents, 14-year-old brother, Micah, and 22-year-old sister, Brittany, were with him.

"We are just relieved and just so happy, happier than in the past couple days, that's for sure," Micah Allen said Friday morning.

He said that even though his brother is nonverbal, "he's obviously 10 times happier. You can tell he's happy to be with us, he's smiling when we walk into the room."

Micah Allen said he expected his brother to be released from the hospital Friday.

Jacob Allen wandered away from his parents Sunday afternoon on the Boar's Nest Trail in Randolph County. Hundreds of volunteers and trained professionals had been combing the woods, calling for him to come to them for candy bars, ice cream and other food. After each shout, they listened closely for rustling brush.

But hopes began to dim after overnight temperatures dropped to as low as 38 degrees. Allen had been wearing only a wind jacket and wind pants over his T-shirt and hiking boots. He had no food or water with him.

When word of the rescue reached the Allens' neighbors in Morgantown, the joy was unconstrained.

"My eyes are full of tears," Don Davis said. "We were just overjoyed the Lord answered our prayers."

"There's really no word to describe the feeling you get to hear something like this," said Pauline Morris, bursting into tears.

"I think the whole state's relieved," said Lara Ramsburg, spokeswoman for Gov. Joe Manchin, who had visited the Allen family Wednesday night.

Schoonover reported from Charleston. Associated Press writers Tom Breen and April Vitello in Charleston also contributed to this report.



Have a great weekend!!!

Wednesday, October 17, 2007 8:24 AM CDT

Sometimes these things don't hit the national airwaves, but I wanted to pass this along. Children and adults with autism go missing more often than most of us think. Amber alerts are not made, because the Amber alert is only for when a kidnapping occurs. So, most of the time, these missing people (usually children) do not get any or very little media attention. Please read & pass this along if you know someone in the area. Our thoughts & prayers are with this family, and we hope he is found very soon.


Crews Search for Missing Autistic Hiker

ELKINS, W.Va. (AP) — More than 50 emergency responders and volunteers searched Monday for an autistic hiker who strayed from his parents in the Dolly Sods Wilderness area.

Jacob Allen, 18, of Morgantown, was hiking with his parents, Jim and Karen Allen, on Sunday afternoon when he got ahead of them and didn't answer when they called out his name, said Chris Stadelman, public information officer at the command post.

The family declined to speak with the media, but thanked searchers for their efforts and asked for the public's prayers, Stadelman said.

While Allen is described by his mother as severely autistic, he is in good physical shape and likes to hike, Stadelman said. He was not carrying food or water.

The family visits Dolly Sods, located within the Monongahela National Forest, a couple times a year, he said.

Temperatures dropped to as low as 38 degrees overnight, said Stadelman, but rose steadily on Monday, which was clear and sunny.

Residents of several counties were searching along with two search dogs and a crew in a National Guard helicopter.

The primary search area was about 4 square miles of terrain that included thick brush and steep inclines.

Officials on Monday asked for more volunteers to join in the search, requesting that they not call, but show up at The Canaan Valley State Park Nature Center.

"We only have one land line for all the calls that are coming in," Stadelman said.



Here is a link to another article, and there is also a picture of Jacob here:

http://www.philly.com/philly/wires/ap/news/nation_world/20071016_ap_wvacrewssearchforautistichiker.html

Monday, October 8, 2007 5:21 PM CDT

Make an on-line slide show at www.OneTrueMedia.com

Finally, that video I promised! It's kind of long (7 minutes or so), but it is cute. This was her first day of school (video) & then second day (stills). She is really enjoying school now, & she looks just like she does in these pix/video. For the first couple of weeks after the first 3 days--not so much!! I'm so happy though, she is actually hugging her teacher now and that is so HUGE!! She really is doing great there.

Emma is starting a feeding therapy group in a few weeks. She'll meet with a speech therapist & a few other kiddos for dinner each week, they'll work on eating, variety, & quantity of foods. We've made some strides with fluids, she does a little better with drinking apple juice and she will eat applesauce & diced pears most of the time. The only real food or source of protein she'll eat is chicken nuggets, and of course, that's not even 100% of the time. We'd love for her to drink her formula (dairy free) & water too. She's taken so many baby-steps up to now, and she has come a loooong way with eating & drinking, so we are patient and know it will all work out in time.


Thanks for coming by! Hope you like the sneak peek into Em & her school days.

Thursday, September 20, 2007 10:55 PM CDT

Thursday, August 30, 2007 10:02 PM CDT

It's been a loooong time. We've been busy, mostly with good stuff. We had a good vacation. Emma did not like the beach too much--very afraid of going in the water (though seemed to like watching the waves). We found great sand socks, & then she was okay w/ the sand. She actually wrote the letter "X" in the sand w/ a stick...and then "O" "U" "T" in a row! Think she was ready to leave the beach? LOL! It rained most of our trip--which probably was for the best. We get to just hang out a bunch as a family, doing crafts, playing games, & just relaxing. It was nice for all of us. We spent the last few weeks spending time with cousins, my mom came for a visit, and we had a lot of fun.

BIG NEWS: Emma is heading to preschool next week!!! She will be in the PPCD program at our local school (Madi's elementary school). Her IEP meeting was yesterday & it went really well. We had a few bumps early on, but ultimately, everyone had Em's best interests in mind. PHEW! Glad it's over (for this year at least!). Her teacher is AMAZING, the classroom is the dream room I'd create for Tiny E!! PECS cards everywhere, picture schedule, choice cards, visual cues from teacher...art, music, life skills...even computers! Way more than I expected. She will be with 5 other kids, a teacher & 2 aides (all wonderful women!!), the children have various disabilities. They will work on things like potty training, dressing, drinking from a cup, trying new snacks, communication, playing, lots of social skills, some fine motor, etc. I really think this will be such a great thing for Emma.

Can you believe our Little Tough is going to preschool?? She has come so very far, and truly time has flown. I will take pictures & post them, and let everyone know how her first week goes. I'm sure I'll have a few tears in my eyes--mostly of joy & amazement at our Emma. She will meet her teacher & see the room tomorrow, we're reading stories about school, & trying our best to prepare her for this transition. I'm still SMILING from ear to ear, thinking of her in school!!

Now that summer is over for us (Madi started 1st grade on Monday, loving every minute of it!!), we'll be on a better schedule, and wow, I'll even have some free time with the girls both at school. I'll try to post some more, & defenitely visit all our friends' sites. Thanks for stopping in & checking on Emma.

Saturday, June 30, 2007 0:06 AM CDT

Hi. We are headed on vacation in a few days, we'll be going to the beach. We are all excited & looking forward to a whole week of vacation. I'll take plenty of pix to post. We're hoping Em does okay with the transitions & also the wind/sounds/sand at the beach. She had a great day today--no major screaming during toothbrushing, did AMAZING getting her haircut (yey! will post pix asap!), & was really good for our sitter (we have the best sitter btw, I wish she could live with us! LOL!) when she shampooed her hair!! Emma often screams during any grooming, and this can be very difficult. Today was a great day for all that!

We received Emma's weighted blanket today from DreamCatchers. It is SO cute (another pic to post!), it's glittery purple Princess print. She really likes it. I ordered it in April, and it was worth the wait. We rec'd a Thomas Train lap pad from them a in May & that is great for her too. After being lazy about it (bad me!) for some time, we've stepped up on all the visual schedule & cues for Em. It seems to be helping & she seems excited about them. :-)

We met again w/ the psych who reviewed all the evaluation information. We rec'd the official diagnosis of Autism (mild to mod) with what appears to be developing savant abilities. Because Emma has made some incredible progress lately, the psych said her diagnosis may change to Asperger's as she gets older (or once her speech improves). She gave some recommendations for school & future needs. We meet w/ the neuro after vacation to further discuss everything.

One thing we are quickly learning as we're meeting others who are either autistic themselves or who are parents of children on the spectrum, everyone has very defenite views on: the cause of PDD, if you should cure it, what therapy to use, what diet to do, and on and on and on. It's worse than politics or religion, I think! We're taking it all one day at a time, educating ourselves as best we can, and just trying to make the best decision. It is a big learning experience, but that is what the past 3 years has prepared us for. It really is amazing though, how raw the emotions surrounding autism are.

I just finished a great book: 10 Things Every Child With Autism Wishes You Knew. It's very upbeat & also further explains autism to people. I plan on passing it around to family & friends. A great kids book is: My Friend With Autism (need to check, think that's the title). It has been great for Madison and we've ordered copies for Em's cousins that live by us.

Well, it's late. Wanted to update again. Next time, I will get a bit into the school. Thanks for stopping by!

Tuesday, June 12, 2007 0:17 AM CDT

Hi! I know it's been way too long since I've last posted. Sorry. It's been hectic here, Madi had tons of end-of-year stuff at school, and we've just been busy with all sorts of stuff. Things are good here. Everyone has been healthy (big hooray!). Here are some pix from the last few weeks:

Emma is THREE!! She had a great birthday & really loved her gifts. I can't believe how old she is. I've learned more in these last 3 years than in any other time of my life. Emma just amazes us and we are so grateful to see her blossoming in her own beautiful way. Here is a slideshow from her birthday:

We had a nice long weekend getaway to San Antonio last weekend. The weather was great (thank goodness, because it is now getting real HOT here!) and the girls had so much fun. Emma just LOVED the Shamu shows & Madi's favorite was feeding & petting the dolphins. It really was a great trip. We also got to visit the Alamo & Riverwalk. It had been awhile since we've gone to San Antonio, so that real nice. Some pix:





Now for the biggest headline: Emma's been going through a formal Autism evaluation these past few weeks. We get the final report next week, but we did get results back today. Emma has mild to moderate Autism. I have more to add to this topic, but I am very tired right now. I will add more in a few days. This diagnosis was not too shocking, but of course it is all still settling in. Emma's diagnosis of static encephalopathy has not changed, autism (like her seizures) goes along with her SE. Nothing too much will change, as far as therapy & all. Some good changes will be better understanding from us & everyone around Emma about what she is going through, as well as more resources & support. We also hope this will help with the school district. That's a topic for another day! Let's just say I think Josh & I both could open an Advocate business by now. ;-)

Sorry for being gone so long, and for not signing any guestbooks. I'm sure things will settle down a bit now that the evaluation is over. I will visit everyone soon. Thanks for coming by. (((HUGS)))

Wednesday, April 11, 2007 11:17 PM CDT

Thought I should update since it had been a while. I have been in bed for the most part these past 2 weeks. My MRSA was a lot worse than first thought--it was very deep (at least the size of a tennis ball). The doctor has drained it twice & finally it is not painful. I went back today, & even though it is still draining a bit, he feels I can come off the antibiotics (yey!!). The wound should close up soon. I am very tired & achy, almost like I have the flu. Josh has taken off work, he's had to juggle the girls, work, school, & me! I'm slowly starting to get better & really hope over the weekend, I'm back to my old self.

Emma has what sounds like the croup. Luckily, Josh & I are old pros at this now, so we start the Z-Cof & breathing treatments at first sign of it and her last few bouts have not been so bad. We're hoping same holds true this time around. Madi is super congested, but seems to be clearing up today. We were in the 30's at night this past weekend, and then 70's today. Allergies are crazy here, so that's causing all of this. Yuck!

We were able to get to the My Little Pony show (I took my vicodin & off we went!). The girls LOVED it!! Emma had a BLAST!! I have a few pix of the weekend, will post here soon.

Emma is doing great, she says "you ha boo-boo" to me. Thankfully, she doesn't seem to mind that I'm out of commission. Madi, on the other hand, is weepy at times. So, I'm very anxious to have all my energy back & feel good. Madi & I will have a girls' day out, she'll love it.

Well, can you believe Em will be 3 in a month? I sure can't. Wow!! We meet with the school in about 2 weeks. Fingers crossed for good services!

I have emails & phone calls to return! Next week, for sure, I will get to them (Elizabeth, Janice, Leslie, Tricia, & more!!) & visit our CB friend's sites too. You all are in our prayers. Thanks for checking in.

Friday, March 30, 2007 8:30 PM CDT

Emma is feeling better--this time, it was nasty MRSA again. Thankfully, we got it early & it is healing very well! She is feeling better, and will be back at her therapies again next week. I also ended up with a staph infection, on my abdomen. It is very painful, I really don't know how the girls have been such troopers through theirs.

We had originally planned on going to Thomas day. Emma is a HUGE Thomas fan & we thought she'd really enjoy it. Thomas is in Austin in October, so maybe we can make that one, or just wait until next year this time. Between us not feeling well, and we've had terrible weather, it's probably a good thing we're not doing it. We are going to try & take her on a regular train ride one of these days. I think she'd enjoy it--just not sure about the sound, sometimes noise bothers her. Anyway, don't tell the girls, but Josh got them tickets to a My Little Pony show for next weekend. I think they'll have a blast.

Have a great weekend. Thanks for stopping by.

Friday, March 23, 2007 4:29 PM CDT

Just a quick update...

Emma had to have another cellulitis lanced today. They will culture it to see if it is MRSA or what. This one is very painful, they got a lot of pus from it. She is still rather uncomfortable--it's on her bottom to make matters worse. She's on medicine for it, we go back on Monday & hopefully culture results will be back. I hate these infections, they are brutal.

I'll update more later this weekend. Right now, I've promised Madi she can do her Webkinz stuff (her latest craze!!). Take care. Thanks!

Friday, March 16, 2007 3:14 PM CDT

Thursday, March 15, 2007 0:09 AM CDT

Emma (& Madi) saw the GI doctor today. He agrees with our plan from Emma's ST & nutrition team at Baylor--increase acceptance of purees & fluids and E028 (similar to Neocate, but more of a juice & hopefully Emma will drink it!), but continue daytime & night feeds via gtube. If Emma can drink at least 8 ounces of the E028, then she won't need to get ANY formula at night anymore!! WOOHOO! She'd still get some water at night, but we could just bolus it like we do during that day. That would be wonderful!

We discussed E-stim, and he said if the choking continues, that it could help; but if the choking is due more to oral motor function before the actual swallow, then there probably wouldn't be improvement. He said that with her apraxia, and that it obviously affects her oral motor function a lot (w/ regard to eating/drinking, aside from speech), that it could be a long time until she is off of her gtube. Fluids are the biggest issue, and it could just be that Emma won't be able to (especially on a consistent basis) consume the amount of fluid she needs on her own. So, at least we have a better picture now of where we are w/ regard to the tube. While we would love for Emma to be rid of the gtube, we realize the importance of it and what a huge help it has been over the past year & 1/2.

No more Gogurt for miss Em. He said that w/ her history of dairy intolerance, that her GI issues & painful rash are from the yogurt. I was hoping it wasn't...wishful thinking! So, we can try soy yogurt & hopefully find soy pizza she'll eat!!

The girls both had fun this afternoon, we played with the neighbors. We did lots of landscape work this weekend, the girls had fun playing outside (water table fun!!). Emma even helped me dig a bit--she was very excited to see all the new flowers. She LOVED throwing mulch with Daddy (so very cute!!!). We pretty much re-did our flower beds in front--it was fun & very relaxing. Josh usually does it all on his own, but I got in there, planted tons (even a palm tree!) and it felt so good. I had zero stress and really felt like I had accomplished something when I was done. So, I may have a new hobby!! I have to thank Ann from Eli's Angels, I wore my awesome hat both days when I was out in the sun. It was perfect!! I know Ann & Chad always did a garden for Eli, and so I thought of them while I was out there as well. Please visit Eli’s Angels to find more about this amazing charity.

Thanks for stopping by. I'll try & get some photos of the girls this weekend. Did I mention Emma is BIG time into tutus lately??? She has worn a tutu for nearly a month now--3 different ones, she goes through phases of which one she prefers. Everywhere we go...her tutu goes too! The awesome thing is--everywhere we go, Emma & her tutu make everyone we see SMILE!

Wednesday, March 14, 2007 11:20 PM CDT

Emma (& Madi) saw the GI doctor today. He agrees with our plan from Emma's ST & nutrition team at Baylor--increase acceptance of purees & fluids and E028 (similar to Neocate, but more of a juice & hopefully Emma will drink it!), but continue daytime & night feeds via gtube. If Emma can drink at least 8 ounces of the E028, then she won't need to get ANY formula at night anymore!! WOOHOO! She'd still get some water at night, but we could just bolus it like we do during that day. That would be wonderful!

We discussed E-stim, and he said if the choking continues, that it could help; but if the choking is due more to oral motor function before the actual swallow, then there probably wouldn't be improvement. He said that with her apraxia, and that it obviously affects her oral motor function a lot (w/ regard to eating/drinking, aside from speech), that it could be a long time until she is off of her gtube. Fluids are the biggest issue, and it could just be that Emma won't be able to (especially on a consistent basis) consume the amount of fluid she needs on her own. So, at least we have a better picture now of where we are w/ regard to the tube. While we would love for Emma to be rid of the gtube, we realize the importance of it and what a huge help it has been over the past year & 1/2.

No more Gogurt for miss Em. He said that w/ her history of dairy intolerance, that her GI issues & painful rash are from the yogurt. I was hoping it wasn't...wishful thinking! So, we can try soy yogurt & hopefully find soy pizza she'll eat!!

The girls both had fun this afternoon, we played with the neighbors. We did lots of landscape work this weekend, the girls had fun playing outside (water table fun!!). Emma even helped me dig a bit--she was very excited to see all the new flowers. She LOVED throwing mulch with Daddy (so very cute!!!). We pretty much re-did our flower beds in front--it was fun & very relaxing. Josh usually does it all on his own, but I got in there, planted tons (even a palm tree!) and it felt so good. I had zero stress and really felt like I had accomplished something when I was done. So, I may have a new hobby!! I have to thank Ann from Eli's Angels, I wore my awesome hat both days when I was out in the sun. It was perfect!! I know Ann & Chad always did a garden for Eli, and so I thought of them while I was out there as well. Please visit Eli’s Angels to find more about this amazing charity.

Thanks for stopping by. I'll try & get some photos of the girls this weekend. Did I mention Emma is BIG time into tutus lately??? She has worn a tutu for nearly a month now--3 different ones, she goes through phases of which one she prefers. Everywhere we go...her tutu goes too! The awesome thing is--everywhere we go, Emma & her tutu make everyone we see SMILE!

Thursday, March 8, 2007 7:51 PM CST

Woah...two updates in a row! Haha! Thanks everyone for all the excitement at Emma's updated site--that for sure made it worth it!! Seriously, it's amazing to get all that support & to see how much y'all care about Emma.

SO PROUD OF EM--she tried some vanilla pudding in therapy today!!!! For 1 1/2 years or so now, her ST has tried & tried, to no avail! But today, HOORAY, with a tongue depressor, Emma ate some vanilla pudding!! YEY!!!

While we are still focusing a lot on fluid oral intake for Emma, the nutritionist said we really need to get Emma eating purees. This will be not only a source of nutrition (w/ opportunity to add secret fats/calories/etc.) for her, but also count toward her fluid intake goals. So, that's why we're going back to puddings & babyfood purees. She is eating Go-Gurt with quite a bit of success. That is amazing!!!

Hope everyone has a GREAT weekend! The girls are THRILLED that Daddy comes home tomorrow!! So am I!! Thanks again for checking in. Em sees GI on Wednesday, so I'll update then for sure.

****The rest is 'boring' medical stuff...lol...feel free to read though. I'd really like to see if anyone else is having or had similar experience. THANKS!!!*****

I have a request for info from other parents here... Emma's always had poor oral motor function, dysphagia, delayed swallow, etc. She has made a great deal of improvement. But, her ST thinks she may be aspirating again--if only a little. Emma is only able to drink from tilted (so her chin stays tucked) sippy cups. Straws cause her to choke A LOT. Even sips straws. We keep going back to it, and she continues to have trouble. So, her ST said if it continues, she'll have another video swallow and then possibly "E-stim" to improve her muscle tone for swallow. They hook up small electrodes to the outside of her throat area & then she drinks while there are small currents released. I'm hoping we'll see a vast improvement soon, and in the meantime wanting to learn what I can about this. By the way, I think it (E-stim) sounds a lot worse than it really is. Although w/ Em's sensory stuff, she'd probably hate it. Anyway, I'm wondering if anyone out there is familiar with this & what their experience has been. Please email us: markhamfamily@gmail.com Thanks!

The other oral motor thing is that her ST feels she has mixed tone of her tongue (high tones in some areas, low tone in others), and possible some other neurological activity going on. She is unable to move her tongue up much, and her tongue continues to make odd movements. We noticed today, that at times during her oral motor exercises, her tongue appears split (like a snake's tongue). We have a few new oral motor exercises plus the old ones we used to do.

Thursday, March 8, 2007 1:24 AM CST

Hi! Finally, I really updated Emma's page--new pix & everything (except for photo album page...I'll get to that someday)!! So there you have it...I can't wait for her to see it tomorrow. I think she'll enjoy it!

Everyone is healthy here. YEY! Emma's had a rough couple of days--more tired, falling, just not herself. Think (hoping!) she may be going through a growth spurt. We had our first meeting with the school district on the 1st. They will do Emma's evals in a couple of weeks, they have a speech program as well as the preschool. Our ECI coordinator (who has been GREAT through all of this!!) & the therapists see no reason why Emma won't get in. But, like anything else, it could be a battle. We'll see. My sister has helped me tons, Thanks Carla! If she is accepted into the program, she would start on May 14!!!! She'd only go for about 2 weeks, then it's summer break. As of now, they will not give her services over the summer--that is something we for sure have to fight for. Wish us luck!!!!

Emma's appt w/ her neuro went well. He increased her Trileptal, even though she was w/in therapeutic levels--he is hoping that prevents any add'l breakthrough seizures. If she does have another one, he'll give us medicine to keep on-hand for when she has a fever. He gave us a referral to a psychologist he'd like Emma to see.

Emma is doing great--she is talking big time! I need to try & videotape it. There are days when her speech is limited, but other days, she is hilarious! She repeats a lot of the same phrases, or what she hears on TV (a few weeks ago, everything was "dot dot com") or from her sister--it's pretty funny actually. She'll say very mature things, in her own language--cracks us up! It's incredible to us, though, how far her speech has come. In therapy, the focus is more on articulation & putting words together (& having all the words make sense). We're doing lots of sensory stuff to help her out in that area--that & her eating are the bigger challenges these days. We work with all her therapists on the eating. We also started using a picture schedule for her, this is really helping her out. I am in the process of making pictures for the bathroom (bathtime & brushing teeth), bedtime, etc. I'm also making social stories for her too, with the help of her ECI team.

She sees the GI doc next week, and I have to call and make a bunch of appts...it's follow-up time & a few new ones. Keep everyone posted.

Wow, I wrote a lot. Not sure how, I'm so tired. Josh is travelling A LOT with his new job, so that combined with just trying to keep up with the girls' schedule, finding time to update is hard. But I will try! When I don't update, I end up having to write a novel, so I will try not to do that anymore!! Thank you for still coming by! I owe lots of guestbook visits, sorry!!

Tuesday, February 13, 2007 9:39 PM CST

Just when I think I'll have time to re-do Em's page...lots of sickness here!!

Emma had a mild cold early last week, and then Madi caught it. She (Madi) didn't sleep for 4 nights in a row, starting last Monday, due to congestion & then cough. She ended up with a pretty nasty upper resp infection, then wheezing (which doctor thinks is first sign of asthma for Madi), and a sinus infection. So, she has been on breathing treatments, antibiotic, and a heavy-duty cough medicine for nightime so she can sleep. A sore developed in her nostril over the weekend, & by Monday it was nasty. It is probably another staph infection, they had to drain it & cutlure it--all on her birthday. That was terrible, it must be so painful. So, she is on a nasty antibiotic for that (please pray no tummy problems for her with it!!).

Aside from her being sick & being poked--she did have a pretty good birthday. I can't believe she is SIX! She is such an amazing kid & Emma could not have a better big sis!!

As for Emma, she decided Madi was getting too much attention & ended up with croup. So, everyone's been getting breathing treatments, humidifiers going, medicine, etc. YIKES! We had to give Em oral steroids too because her breathing had gotten pretty bad. She was a barrel of energy this evening from them!!! We hope both girls are feeling completely better ASAP!

Madi goes for her 6 yr well-check tomorrow & follow-up for infection. Hopefully she can get to school for Valentine's Day (she's missed 2 days last week & this week so far, even her birthday--no fun!). Emma sees her neurologist & nutritionist on Thursday. She'll have speech too, so long as her cough is better.

It's been a nasty winter for everyone, so I hope everyone is able to avoid the icky germs from here on in!! Thanks for checking in. Will update later this week & hopefully will have a chance to update this page too! I have all the pictures picked out.

Monday, February 5, 2007 11:00 PM CST

More good news--Emma's sonogram results are good. Her kidneys are growing & look great! YEY! Her deflux injections are still in place in both kidneys, so that is good news too. The urologist said we'll never really know if she did have a UTI 2 weeks ago. As long as she does not have another one--she does not have to see him again!! We are very excited about that. Basically, we just have to be careful down the road & watch for UTI's. Also, because of her kidney problems, Emma is at risk for high blood pressure. I never knew the two were connected. There's nothing special we need to do, just make sure she gets physicals 2x a year & that we tell any doctors she sees about her kidney history.

I have yet to re-do her page. Yikes! I have lots of new pictures & all. During the day, it's nearly impossible to be on the computer for any length of time, and come the evening, I'm wiped out to do all that. I will try to get to it SOON.

Both Emma & Madi have the sniffles. Emma started over the weekend, Madi's began this morning. So far, it's staying in the nose (a good thing!), hopefully they'll both feel better SOON. No fever, so I'm relieved about that.

Big News--Our ECI coordinator came by last week so I could sign the paperwork for the school district. I can't believe Emma will be 3 in 3 months. WOW--time just keeps zooming by!! ECI will release all their records, & then the school will do their own evaluations. After that, we meet & find out what services (OT, PT, ST, etc.) they'll offer Em in addition to the school program. I actually met the PPCD aide the other day--Madi had a 100th Day parade & we spoke. She is so sweet & said their program is great. I'm excited & I think Emma will really enjoy going to school as well.

This entry is so long--but I have the time, so I'll keep going! Who knows when the next one will be! I have a few funny stories about Emma...

HUGE NEWS: Emma made a drawing of a person (a big circle, lines coming out of it for legs & arms, 2 circles for eyes & a line for the mouth). I was in shock. She also made a bunch of lollipops in a picture too. These are not things we've ever shown her how to do. Just like when she knew all her shapes months ago. She blows us away--there is so much inside that head of hers, so much that she can't verbalize to you, & so you just don't know...and then you get these glimpses of it, it just amazes us! I'll try to scan our little Picasso's pictures on here.

More little tidbits...The other day, she must have heard a commercial with a website address in it. She got "dot dot com" stuck in her head & was saying it all day. Everything was "dot dot com," it was too funny! She has been living in her rain boots for more than week now. She goes through these phases where that's all she'll wear. She looks just adorable in them. Oh--you cannot tell her she is cute, or a big girl, or anything else--she'll say "NO, I Emma!" You can, however, say "Emma is cute," "Emma is a princess," etc.!!! She's still quite feisty when it comes to her sister. Madi is very patient, thankfully. Emma continues to hit & now biting too. It comes & goes, some days are really bad. We've tried everything, even with the help of the ECI counselor. Emma gets so much--things that just amaze us, and then other stuff--it's just not there yet. All part of the beautiful mystery that is our Emma! The counselor, who is great, said that kids with encephalopathy can have impulse control issues, and that could be why no matter what we try, she continues. I'm sure that combined with her speech & sensory issues, it must get frustrating for her.

She's having a very hard time with sensory stuff lately--new issues & some old ones. Our OT is terrific, so we are getting a lot of support & ideas to help her out. We do a few 'sensory workouts' each day (Emma could live on a ball, I think, just bouncing her cares away!) and that helps. The other big challenge is Emma's oral intake. We have laid off the food deal, but her drinking is still next to nothing. Bribery (a train for each sippy cup worth of drink consumed--she earned 1 in the past 1 1/2 wks) didn't work, so we'll have to try something else. Please pray for Emma to feel more comfortable & that she can start drinking better. Thank you!

Well, that is all from here. Thanks for checking in. We appreciate it SO much. I'll try to post more regularly, so I don't write these novels each time!!!

Tuesday, January 23, 2007 8:02 PM CST

Good news to report:

Michael (Emma's cousin) was able to come home & is starting to feel better. Those tummy bugs are just so brutal on little ones. We hope he's back to his old mischevious self real soon!!!

As for Emma, she is doing okay. Super fussy, I feel bad for her, because I think she knows she's not herself. She gets upset so easily & things just don't seem to work out the way she wants them to. Hope she has some better days here soon. The Upper GI was no fun, of course, she was very scared. But, we did get through it & as far as what the radiologist said, there were no hernias & her fundo is intact. PHEW!! Awaiting final word from GI to see what he says.

We see the urologist next week, and Emma will get a renal sonogram as well. They'll re-check her urine & try to determine what's going on. I'm still hoping the results were a fluke & her kidneys are A-OK.

Emma has to get labs done tomorrow. Her neurologist ordered them, to see what her levels & electrolytes are like. Then, he'll decide what, if anything, he wants to do.

So, that's that. It's been a hectic few days & looks like we have another week to go before things settle down! Madi has a sinus infection too--her allergies are just horrible, despite medicine. Texas is just terrible as far as allergies go.

I really need to update Em's page here...the pix are getting pretty old! So, I'll get some new pictures of her & a new theme on here soon. Thanks everyone for all your thoughts & prayers. They really do carry us through the rough spots!!

Sunday, January 21, 2007 5:38 PM CST

Before Emma's update, I have a prayer request. Please keep Emma's cousin, Michael, in your prayers. He came down with a nasty tummy bug & has been in the hospital since Friday. He was very dehydrated. He should get to go home today. Please pray he does, & he's feeling all better real soon! I know my sister & family appreciates it. Thank you.

Well, Emma is finally recovering from it all. She's been seizure free & no more fevers for a few days. Thank goodness. She is very wiped out still & more irritable. I think she is feeling better as far as illness goes, after her last big seizure it took her a week or so to be back to her usual self.

The doctor confirmed on Friday that she did have chickenpox (the way they looked, and 2nd opinion made them feel that's 100% what she had). The antiviral medicine has helped clear the pox up & thankfully, she never seemed bothered by them. They were only on her torso, although her torso was full of them. I'm glad they didn't bother her, the fever & seizures were enough for her to deal with. She was vaccinated for chicken pox, which is why her infection was not too bad. We are so glad about that!

The ER did not culture her urine (someone messed up big time...grrr!), so because of her kidneys, we have to assume she did have an infection. The culture is important because sometimes a urine dip test will show signs of an infection, but the culture won't actually grow anything significant. There was bacteria & white blood cells, so the doctors are assuming she did in fact have a UTI. We go back in 2 weeks to re-check her urine & we'll contact her urologist this week. I'm really upset the ER didn't culture her urine--for Emma, those results would have been vital. She is on antibiotic to cover a kidney infection.

We'll hear back from her neurologist this week. He is out of town until Wednesday. His office is great though--they called at almost 8 pm on Friday night to check in on Emma & get more info. I don't think they'll change her meds like last time--she's on a high dose. The ER doc said the neuro may give us medicine to have on hand next time she gets a fever. I was really impressed by his office calling though. Her neurologist called us on a Saturday once, to explain EEG results too. I am so thankful we have these amazing docs to care for our Emma.

Emma will have an Upper GI tomorrow (not contagious anymore). Normally, I might push it back a few more days to give her a break. But, the GI wants to know what's going on & when Emma was really sick, it sounded like her stomach was refluxing (or doing something odd) nonstop. She's coughed a few times after we hear what sounds like reflux. It's important to find out, especially with a fundo & feeding tube, what all is going on. Please pray it is something simple & also that she doesn't need a ph probe. Thanks!

Thank you everyone for your thoughts & prayers. We have seen many, many times now how they do work. It helps us tremendously knowing so many people care about our Emma. THANK YOU!

Wednesday, January 17, 2007 8:58 PM CST

Please say a little prayer for Emma tonight. She's sick with high fever (highest was 105) & was in the ER last night. She had a couple of partial seizures & a cluster of tonic seizures last night. Thankfully she has not had one since 2 am this morning. She has either chickenpox (yes, she has been vaccinated) or folliculitis (a minor staph infection). The doctor thinks it's more likely the chicken pox--her rash looks more like that than anything else.

Also, in the ER they did a urine cath & initial results look like a UTI. We are awaiting on the cultures for more info on that. She is on antibiotic, as well as antiviral medicine to cover all that may be going on. I am very relieved she did not get admitted today, her fever broke just in time. She is resting comfortably--I pray she has a quiet night. Last night was very difficult on her (& me!). Josh is out of town, but thankfully his parents & our neighbors have been a huge help.

To top it off, when we left the ER around 5 or so this morning, it had been sleeting/snowing (w/ some ice) for an hour. So our drive home was very slow & a bit scary. Between Emma being sick, her seizures, & the roads--I think my nerves are shot!

Also--Em was supposed to have an Upper GI this week (first on Monday, cancelled because of icy roads, then set for today, of course cancelled). She'll hopefully have it on Monday. The prevacid has not helped her reflux (or what sounds/looks like reflux), so GI doc wants to see what's going on. He said it could be fluid pooling above the fundo, a problem w/ the fundo, or a hernia. So, we'll hopefully find out something on Monday. We're hoping that it's easily treatable.

Please pray she feels a lot better tomorrow & stays fever & seizure-free. Also, we are praying she does not have a UTI, as that means her kidneys are not functioning properly again. THANK YOU!

Promise to get some pix up here soon.

Monday, January 8, 2007 8:37 PM CST

Hi there. Things here are well. Emma finally kicked her bronchitis--took a bit longer this time than usual, but she is A-OK now! Madi started back to school last Thursday--she was thrilled! I think Emma enjoyed having some Mommy-Only time!

I will post holiday pix SOON. The girls enjoyed all that was Christmas--the lights, the music, all the time together. It was very nice. Emma is LOVING her train table, Dora castle, & other goodies. Madi loved all her gifts too. The best gift that Josh & I received was just seeing the excitement & wonder that the girls had.

Now that the rush & buzz of the holidays is over, we are settling back into our normal routines. Emma has OT tomorrow & then ST on Thursday. Her nutritionist is happy with her stats--she is now in the 10% for height!!! VERRRY exciting. She lost some weight, but that is okay, because she was actually getting overweight for a while. So, that is great. We are going to focus on Emma's drinking vs. her eating. We're hoping we can bump up her oral intake (currently around 6-7 oz per day), and then work on her foods. Her tummy troubles may have returned--after cutting her juice & then the antibiotics for 2 weeks, her diarrhea was GONE...but today it was back. So, we have to wait another day or so to make sure it's not a bug, & then the GI doc will figure out what to do. Poor thing, it hurts her bottom so much. Aside from that, she is doing wonderful. Talking up a storm & just trying so hard. She is amazing & so much fun.

Happy New Year everyone! I am trying to get our house organized, we now have a very kind lady coming by twice a week to help me out. YEY! So, I've been really focusing on getting things in order here--seems like the last 2 1/2 years, things just have stacked up!! It's been nice having the help & finally being able to clean up a closet or cabinet. My birthday is tomorrow (woohoo!)--I think after 21, there's really not much excitement about them! Madi is very excited, she is all ready to sing to me. So cute! I am very grateful to be home this year--last year Emma was very sick in the hospital this week. So, to have her healthy & blooming--what greater gift is there?

Thank you for coming by. To our CB friends, I promise you are in our prayers & thoughts. I am trying to schedule my time better & make sure to visit & sign guestbooks. Please know we think of you!! Have a great week. Take care!

Please keep Taylor's family in your thoughts & prayers--she was very sick & in the hospital. Thankfully, she came home last week, please pray she feels better soon.

Also, continue to keep our friends, the Reynold's family, in your prayers.

Thank you.

Sunday, December 24, 2006 9:04 PM CST

The stockings are hung by the chimney, with care
And two little girls have hopes that St. Nick will be here...

We are having a wonderful Christmas thus far. We had family over, including Nanny, today. All the kids had a blast. Emma is really enjoying presents this year--it is fun to see all the excitement in her eyes. She's always loved the Christmas lights & I always love seeing Christmas through both our girls.

Thank you everyone for your thoughts & prayers for not only Emma, but Madi & our family too. They are greatly appreciated. We are so blessed, in so many ways. We wish everyone a Merry Christmas & Happy Holiday Season!

Thank you for coming by & checking on Em. I will update with photos ASAP!! Emma is feeling better, Madi too. Madi's MRSA infection is cleared up & we're taking some steps to hopefully avoid any further flare-ups. Emma's croup turned into bronchitis, so we had a few long nights where her breathing was not too great. But, thankfully, just in time for Christmas, she is feeling better. She is SUCH a big girl with her breathing treatments now--we are so proud of her!!

Love,
The Markham Family

Monday, December 18, 2006 10:47 PM CST

Thank you everyone for passing along your thoughts & prayers to the Reynolds. I know Leslie & her family greatly appreciates it. Not much time goes by in my day that I don't think of Morgan or Leslie and the family. The tears fall easily simply by seeing Morgan's picture or just thinking of the enormous heartache her family feels. Morgan's service is on Wednesday & I ask that everyone once again lift them up on prayer.

We are getting geared up for Christmas. The girls just love all the decorations & lights. Emma is enjoying the Christmas music a lot--especially Jingle Bell Rock! I am pretty much done shopping (yey!) but have a ton of wrapping to do. I don't think it would be Christmas without that last crunch & cramming in the end!!

Madi had a sore (like Emma gets) last week--poor thing had to have it drained (big ouch!) & we found out today it is MRSA. She's been on oral & topical antibiotics & now we need to put neosporin in her nostrils for 2 weeks. We are praying she doesn't get more infections like Emma has. That MRSA is brutal & we hate it!

Emma has croup, so she is feeling pretty horrible today. Hopefully the breathing treatments will help her by tomorrow & we can avoid oral steroids. She is talking more than ever! It really is just amazing. Ever since that bad seizure, she is talking more & seems to learn new words each day. We are so excited for her, you can just tell she is happy to finally be able to speak up about things!

I'm sure I have other things to update on...but it's late & I can't remember anything else. Thanks everyone for stopping by & checking on us. To our fellow CB friends, I promise to get back to signing guestbooks soon, you all remain in our thoughts.

Take care.

Our Beloved Friend, Morgan Elizabeth Reynolds
May 12, 2004 - December 16, 2006
Fly high, sweet Angel
We love you!

Saturday, December 16, 2006 5:05 PM CST

Our Beloved Friend, Morgan Elizabeth Reynolds
May 12, 2004 - December 16, 2006
Fly high, sweet Angel
We love you!

Thursday, December 7, 2006 6:58 PM CST

Our Friend Morgan

Thursday, December 7, 2006 6:56 PM CST

Our Friend Morgan

Thursday, December 7, 2006 6:30 PM CST

Things here are good, I have a few updates, but the only thing I can type right now is to ask for your prayers. Please keep our dear friend Morgan, her big brother Carter, & their amazing parents, as well as the entire Reynold's family in your prayers. I am in tears as I type this, Morgan is going to be under the care of hospice at home, the angels are calling her home to Heaven. Please pray Morgan remains comfortable during this time and pray for Carter that he can find peace & understanding, and for Leslie & Bernard to continue having the strength & faith they've had these past 2 1/2 years.

As most of you know, our girls share a birthdate & also a resemblance. I keep a picture of Morgan on my desk, next to my girls. It breaks my heart to see this happening. Leslie has become such a great friend this past year & words just cannot express what I feel for all of them right now. Here is the link to Morgan's page (there's is also a graphic link above), please also, if you haven't already, find out about mito (links below). This is a horrible disease.

Thank you.


Miracle For Morgan

UMDF

Eli's Angels

Children's Healthcare of Altanta


Film on Mito

Sunday, November 19, 2006 7:57 PM CST

Can't believe the start of another week is upon us! Time really seems to fly by. Emma is doing better, she isn't feeling great--not quite herself yet--but no more seizures or high fevers. She's very fussy & gets upset easier than normal, plus she is tired all the time. Her neurologist thinks it's the increase in her seizure medicine. So, we are now giving it to her 3 x a day. Hopefully this will decrease her fatigue & fussiness. As long as that works & she doesn't have anymore seizures, she can stay just on trileptal. We are happy about that, from what we have read it's a medication with a lot less side-effects, and Emma has always done well on it.

We're hoping we'll see our old Emma back here in the next few days. Josh is off all week, so that is good. We're looking forward to Thanksgiving & then of course decorating for Christmas next weekend. Emma LOVES all the lights.

I'll take some pictures of the girs this week & post them. Please keep our friend, Morgan (& her family), in your prayers. Her website link is above. Thank you!

Saturday, November 11, 2006 10:16 PM CST

Emma had a much better day today. We went to the doctor this afternoon, and she had not had fever at all. In fact, this morning, her temp was 95.5! The doctor thinks it must be bacterial since she had been fever-free following the rocephin shot. If she had a virus, the fever would continue. He thinks it's probably a kidney infection, but won't know until Monday when labs come back. If that's the case, that really stinks because of Emma's past kidney problems. I am praying this won't mean she'll need another surgery. I was hoping it still could be a virus, but tonight Emma had a fever again. She is on antibiotic, so whatever she has should be on it's way out SOON.

The lab does not do trileptal levels stat, so we won't have that until Monday either. The increased dose seems to be doing the trick--she is much less 'twitchy' today, so that's good. Emma had a lot of fun this afternoon visiting with our neighbors. It was great to see her looking better after yesterday.

Hopefully with rest & this medicine, she'll be good as new by the end of the weekend. She is quite a trooper!! Thank you everyone for your prayers, phone calls, messages, & support!!!

Saturday, November 11, 2006 3:06 AM CST

Finally an update...with some pictures too!

Emma had a really rough day today--she had fever yesterday so I brought her into the pediatrician's. Other than fever, she had no symptoms, so with Emma, they have to check her urine (make sure her kidneys are ok). We tried to have her go on the potty, that made her so upset, so the nurses put the collection bag on her. She was very sleepy all day, & so after that, she fell asleep again and I held her. About 40 minutes into waiting for her sample, she let out a cry & then her eyes were looking up & she was stiffening up. I called the nurse & we laid Emma down. She had a grand mal seizure. It was horrifying to see her like that--she turned blue & foam was bubbling out of her mouth. It lasted for 45 seconds or so, but felt like forever while it was happening. Afterward she was out of it & that was equally as scary. We were at the doctor's for over 4 hours, after the seizure they had to keep track of her vitals. They ran a bunch of bloodwork to see if anything more serious than a virus was going on. They'll check her urine too to make sure all is ok there. Emma got 2 shots (poor thing, at least I don't think she remembers any of this a.m.) in case what she has is bacterial. I think it's at least helped her fever, it's been down ever since. We are hoping her trileptal levels are low, and so that combined with an infection is what caused the seizure. I pray she never has a seizure like this again. I thought of the moms I know who deal with this type of thing daily, sometimes all through the day & night.

I am very thankful we were still at the doctor's office. Had Emma peed right away, we'd have been on the road or at home with Madi when the seizure happened. I surely would have been in major panic mode then. Now, at least, I know what to do. If something like this one ever happens again, they said we need to call 911. Because Emma's seizures in the past are partial seizures, I really had never been 'trained' on what all you do during something like this. Please pray that Emma is feeling better tomorrow & a change in medicine dosage is all that's needed. Thank you!

My sister picked up Madi for me & is keeping her all weekend. What a blessing that was! Thank you Denise & Julio! Madi is very excited to be having a fun sleepover, Josh & I are relieved knowing she is in good hands & having a great time. We can focus our energy on miss Em. I slept earlier tonight, then woke up a while ago as Josh was going to bed. They told us to keep an eye on Em while she sleeps, so we've been checking on her. We were going to bring her into our room, but she sleeps so much better in her crib & with the feeding tube, it's easier. She is resting just fine tonight, so that is a relief & her fever seems gone. Thank you to our awesome neighbors too--Kathy for keeping Em & I company while until Josh got home and Trisha for checking up on us this evening. We are surrounded by some great people who give us so much support. It makes things so much easier to deal with.

Thanks for coming by. Sorry I'm barely updating lately. We have been busy (mostly by Madi's social & school calendar!!!) & my computer time is less due to my neck. One more month of PT for me & hopefully I'll be good as new! Here are pictures from Halloween--Emma was not a witch. She was screaming big time when I tried to put the dress on (the same one she loved up until Halloween night!), so thankfully I had kept Madi's butterfly costume & Emma was HAPPY with that. They both looked adorable & had a blast trick-or-treating. Emma was singing & just having the best time ever!! It was a great thing to see her out there--last year she was still not walking on her own & was having so many other issues. She has come so very far!!!

---

Saturday, November 11, 2006 3:06 AM CST

Finally an update...with some pictures too!

Emma had a really rough day today--she had fever yesterday so I brought her into the pediatrician's. Other than fever, she had no symptoms, so with Emma, they have to check her urine (make sure her kidneys are ok). We tried to have her go on the potty, that made her so upset, so the nurses put the collection bag on her. She was very sleepy all day, & so after that, she fell asleep again and I held her. About 40 minutes into waiting for her sample, she let out a cry & then her eyes were looking up & she was stiffening up. I called the nurse & we laid Emma down. She had a grand mal seizure. It was horrifying to see her like that--she turned blue & foam was bubbling out of her mouth. It lasted for 45 seconds or so, but felt like forever while it was happening. Afterward she was out of it & that was equally as scary. We were at the doctor's for over 4 hours, after the seizure they had to keep track of her vitals. They ran a bunch of bloodwork to see if anything more serious than a virus was going on. They'll check her urine too to make sure all is ok there. Emma got 2 shots (poor thing, at least I don't think she remembers any of this a.m.) in case what she has is bacterial. I think it's at least helped her fever, it's been down ever since. We are hoping her trileptal levels are low, and so that combined with an infection is what caused the seizure. I pray she never has a seizure like this again. I thought of the moms I know who deal with this type of thing daily, sometimes all through the day & night.

I am very thankful we were still at the doctor's office. Had Emma peed right away, we'd have been on the road or at home with Madi when the seizure happened. I surely would have been in major panic mode then. Now, at least, I know what to do. If something like this one ever happens again, they said we need to call 911. Because Emma's seizures in the past are partial seizures, I really had never been 'trained' on what all you do during something like this. Please pray that Emma is feeling better tomorrow & a change in medicine dosage is all that's needed. Thank you!

My sister picked up Madi for me & is keeping her all weekend. What a blessing that was! Thank you Denise & Julio! Madi is very excited to be having a fun sleepover, Josh & I are relieved knowing she is in good hands & having a great time. We can focus our energy on miss Em. I slept earlier tonight, then woke up a while ago as Josh was going to bed. They told us to keep an eye on Em while she sleeps, so we've been checking on her. We were going to bring her into our room, but she sleeps so much better in her crib & with the feeding tube, it's easier. She is resting just fine tonight, so that is a relief & her fever seems gone. Thank you to our awesome neighbors too--Kathy for keeping Em & I company while until Josh got home and Trisha for checking up on us this evening. We are surrounded by some great people who give us so much support. It makes things so much easier to deal with.

Thanks for coming by. Sorry I'm barely updating lately. We have been busy (mostly by Madi's social & school calendar!!!) & my computer time is less due to my neck. One more month of PT for me & hopefully I'll be good as new! Here are pictures from Halloween--Emma was not a witch. She was screaming big time when I tried to put the dress on (the same one she loved up until Halloween night!), so thankfully I had kept Madi's butterfly costume & Emma was HAPPY with that. They both looked adorable & had a blast trick-or-treating. Emma was singing & just having the best time ever!! It was a great thing to see her out there--last year she was still not walking on her own & was having so many other issues. She has come so very far!!!

---

Thursday, October 26, 2006 3:49 PM CDT

Things here are well. Emma had a tummy bug last week, but it came & went quickly, thankfully. She got her flu shot too & is doing good in therapy. Madi has the cold that I had last weekend. Fun! My neck/back is doing okay.

I have some new pictures, but wanted to put this out asap.

Please keep Morgan in your prayers. She is in the hospital & had to have a new feeding tube placed. For the past few months, Morgan has been having a more difficult time with seizures & screaming episodes, she has been in pain & her parents have been trying for months now to help her. We hope this new procedure will help Morgan, and that she will be feeling better and home soon.

I have become good friends with her mom, Leslie, over these past few months. We met when we went to Atlanta & she was a huge help in planning our trip there. I have Morgan's picture on my desk, next to our girls' pictures. She & Emma share the same birthday, and Morgan has a very special place in our hearts.

Please pray that this g-j tube helps Morgan's tummy & pain, and that the docs can figure it all out. Thank you. www.miracleformorgan.org (the link is also above)

---

Monday, October 16, 2006 2:27 PM CDT

Here are some pictures from our day at the fair. We all had a blast!! We hadn't gone in two years, this was the first year Emma was able to go. It was a big deal thinking of how far she has come--and seeing her enjoying EVERY bit of the fair. It was sensory heaven for her!! She is a daredevil--even going on a few rides & fussing to go on more (in fact, the crazier the ride looked, the more she wanted to go!!). Think she'll be getting season passes to Six Flags when she is older!! Both girls loved all the sights & sounds, Josh & I dug the food--including fried twinkies!! We stayed for the light parade, Emma LOVED the marching band. The kids got to see lots of animals, all sorts of neat stuff. One of the funniest things was passing the tractor display (25 tractors or so), Emma shouts "KACK KUH!!!!" (aka TRACTOR!). She was very excited about seeing tractors. She loves all vehicles, including tractors apparently!! Too cute!

Josh won Emma a Super Grover, nearly her size, she was overjoyed about that! She would not let him go. Madi won herself(!!) a jaguar & Josh won her a Cowboys football.

Madi had off all last week, so we got to hang out & do some fun stuff. We had Jacqueline & Tomas over last weekend, all the kids enjoyed that. We also got to visit with our good friend, Rhonda, who was in from NJ. That was a treat! The weather is cooling down, so we're spending more time outdoors. YEY!

Madison is doing great, she had her first progress report for school & is doing amazing in all areas! The teacher told me she will be a very independent woman & defenitely a leader! For sometime, she needed to gently remind Madison that she was the teacher--I told her I often have to remind Madi that I am the parent! I explained to her teacher about Emma, and how Madi is now accustomed to helping & doing for her, and leads all of the play & conversation. The teacher said that all made sense, how Madison is at school. Madi will be considered for the gifted program this next week. We are very proud of her!

Josh will hopefully have some exciting news to report soon...but I can't say anything more than that for now! He is doing great--a few more classes to go & he graduates from night school. He started playing soccer too. I am having back & neck problems & am in PT twice a week to hopefully resolve the neck spasms & pain. Emma is so sweet, when I need to lay down, she comes over to me, says "boo-boo?" and then hugs me. Josh has been doing a one-man-show at home (& work!), he is having to do double-duty for me here. We are hoping I feel some relief SOON!

Emma really is doing great--she has been cold-free for a few weeks now. YIPPEE!! We have started all the services from ECI--OT for sensory, we already have all sorts of new ideas & exercises to help her sensory problems including eating. Also, the OT is getting her weighted utensils which hopefully will help her to use them (the tremor makes it difficult). We are so happy to have this OT back, she is great & worked with Emma when she was younger. Emma has already eaten some yogurt--a HUGE feat!! We also have a great behavioral specialist who will help us with Emma's social skills & behavior--he has been a big help already. He helps determine what the issue is--sensory-related, behavioral, or part of Emma's encephalopathy. He has given us ideas of some new games to play (calling Emma & rewarding her when she comes to us is one of them--she's not too fond of it yet, but really enjoys eating the candy corn she gets as a treat!!). She also now has a nutritionist who closely monitors Emma's growth & diet (something we've needed for quite some time--big relief!). She has given us new ideas on presenting food--Emma now gets one new item on her plate, we don't ask her to eat it or anything, simply when she is done, she kisses the food goodbye before we put it in the trash. It will be a slow process--she still is not always okay with having other food on her plate. Also, they are going to help us create social stories for Emma, to help her in those settings. We really have a great team this time around with ECI, our service coordinator is awesome too!!

Speech is going well--Emma's therapist said this week that the only consistent thing about Emma is her inconsistency! It is true--somedays she can say certain words, other days, she won't even attempt them. She has defenite trouble with certain letters, so we are increasing those types of flash cards. Emma has become a great parrot!! She often repeats (in her own language!!) whatever you say--which makes for some very comical conversations! Also, she will very believably agree to anything...you'll ask her "Emma, would you like a hamburger?" and she'll nod her head & say "Yeah, umbuh." She'll do this with anything, if you put the food in front of her, then she'll push it away and say no. But, it's hilarious, all we hear all day is "yeah this" & "yeah that." I will have to get some video of it, because seeing her nod her head & say "yeah" is just priceless!

Well, that is it from here! We have some follow-up appointments these next few weeks--the dentist, ENT, & sleep study, then in November Emma sees the urologist, GI, and allergist. With my neck, I'm not on the computer at all, so I'll update when I can & with any new news from here. Thanks for stopping by! To our CB friends, I will try & visit to catch up, but may not be able to leave guestbook entries for now. Take care!

Monday, September 25, 2006 9:00 PM CDT

Saturday, September 16, 2006 11:41 AM CDT

Well, Emma & I had our first "Mommy & Me" class at the gymnastics center. In the beginning, Emma was just laying on my lap, not wanting to look at anyone or do anything. After the 'warm-up,' we went to the trampolines, which Emma LOVED! She would stop & go stare at the wall if anyone tried talking to her. But, she really enjoyed herself. Then she got to jump into a foam block pit, go down a slide, play on mats. We helped her do a forward & backward roll, and lots of other fun stuff. A lot of the equipment was what she was used to from PT and there was lots of fun sensory stuff too.

I have not really been around other kids Emma's age recently. I was amazed at how much talking they do!! I know Emma's speech is one of her biggest challenges, and what makes socialization so hard for her. She did hit a boy, but his mom said her son was usually the one hitting, so she was cool about it! PHEW! She hit me a couple of times, screamed a lot & tried running away every few minutes. BUT, in the end, I am so VERRRY proud of her!! I am so glad that we've been going there with Madi for almost 2 months now. We watch Madi from the stands during gymnastics, so Emma was familiar with the center AND Madi's coach is also our class teacher. So, it worked out very well.

The BEST part was Emma's face looking quite proud of herself after doing something new. It's a great look, I need to try & capture it in a picture! She tucks her chin down, raises her eyebrows, & sticks her tongue out. It's priceless!!!! At the end of class, Emma got TWO stamps (on her hands) AND a sticker. She was SOOO excited. Each time we leave Madi's class, Emma throws a fit because she does not have a stamp. So now, she was overjoyed! They also give you a sheet, indicating what skills your child achieved--Emma, just like all the other kids, got a check for the trampoline!!!! GO EMMA! We were heading to the car & I asked her if she wanted me to hold the paper. She shook her head "NO!" It was her badge of honor!! WE ARE SO PROUD OF OUR EMMA!

Okay, so I know I just went on & on over a "Mommy & Me" class, but it is SUCH a big deal to us. Emma is almost totally over her cold. I think the allergies are so bad here, it's just that time of year. She saw the GI doc yesterday, & her weight is back down a bit...but remember, for once, that is a GOOD thing. She was gaining weight too quickly & was bloated. So, he was pleased with where she is now AND she is 33 1/3 inches...GROWING! We go back in 2 months & he just wants to keep an eye on her weight. She'll start seeing a nutrionist, and that will help us even more figuring out her caloric needs & all. We need to increase her fluids (water) by 20 oz. I was surprised how many ounces she needs in a day. It was a good appointment.

We are headed to the airport soon to pick up Nanny. Madi is VERY excited. I know Emma will be happy to see her too...and to get to go the airport. Emma's big things lately, in addition to cars (Hi5 & Blue's Clues are still cool too!) are Sesame Street, trains, & PLANES!! So, she'll love seeing them so close.

Here is a GREAT video I stumbled upon. Even though it is about a girl w/ autism, it could apply to any child with special needs and a sibling's portrayal. This brother is just incredible and I have a feeling our Madi will be a lot like him when she gets older. Grab your tissues, I cried when I watched it the first time. Click stop above on the video before you click on this to play.





Thanks for stopping by. Have a great weekend. We meet again this week w/ ECI and Em has speech, of course. Emma has her sleep study on Thursday--Wish us luck!!

Tuesday, September 12, 2006 11:04 AM CDT

Hi there. Some updates & requests for some of our CB friends...

Emma is sick again. I guess cold season has officially begun here! She does not have croup, but it is a nasty cold, you can hear the mucous getting stuck in her airways. We've started her on the breating treatments and medicine, so hopefully she can kick this quickly. The advantage we have this year is the knowledge of what to do (treatments, medicine, etc.) for Emma and to start EARLY. We know she can go from bad to worse with what seems like a mild cough. We have learned (finally!) that we need to treat her colds far more aggressively than we do with Madison. It takes a while for us parents to get that all down pat!

She is really feeling miserable today. She just wants to be held and is so floppy. Hopefully she'll be feeling all better by the weekend--Nanny (my mom) is coming! Madi is very excited!! We can't wait. We also have some fun stuff coming up--Dora is going to be at the mall on Saturday, Josh's birthday is next weekend, and my mom is going to make a Thanksgiving style dinner for us! YUM!

Other updates: Emma is also supposed to begin OT this or next week, and we meet again with the counselor (help w/ behavioral concerns, social skills, aggression) next week. Also, Em has her sleep study next week--not looking forward to that!

Please keep our friends in your prayers & visit their sites and sign their guestbooks. Thanks!

Taryn had a Gtube placement recently. She had some complications and is still having a lot of discomfort. We hope she is home soon and feeling better.

Taylor had to have her surgery postponed until 9/28 because she has an infection. We pray she stays healthy and that they can help her comfort level for the next 2 weeks.

Caden is having surgery this morning. We hope all goes well and he is home this evening. Also, his 3rd birthday is coming up and he has been learning all sorts of new things--like saying "hey" and "more" and sitting up!

Joseph is having an endoscopy & colonoscopy today. We hope they went well and the docs can figure out what's going on with his tummy soon.

Patrick began school again & that is very exciting. He is also having a lot more seizures again, we're praying his doctors can help those soon.

Morgan is having some difficult seizure days and still screaming for hours some nights, the doctors are not sure why she is in so much pain. She finally has a nurse to help her mommy out during the week, and that has been going well. We are so happy about that, and we really hope the GI doctor or someone can figure out why she's having the discomfort and help Morgan.


Thanks for stopping by!

Tuesday, September 12, 2006 11:01 AM CDT

Hi there. Some updates & requests for some of our CB friends...

Emma is sick again. I guess cold season has officially begun here! She does not have croup, but it is a nasty cold, you can hear the mucous getting stuck in her airways. We've started her on the breating treatments and medicine, so hopefully she can kick this quickly. The advantage we have this year is the knowledge of what to do (treatments, medicine, etc.) for Emma and to start EARLY. We know she can go from bad to worse with what seems like a mild cough. We have learned (finally!) that we need to treat her colds far more aggressively than we do with Madison. It takes a while for us parents to get that all down pat!

She is really feeling miserable today. She just wants to be held and is so floppy. Hopefully she'll be feeling all better by the weekend--Nanny (my mom) is coming! Madi is very excited!! We can't wait. We also have some fun stuff coming up--Dora is going to be at the mall on Saturday, Josh's birthday is next weekend, and my mom is going to make a Thanksgiving style dinner for us! YUM!

Other updates: Emma is also supposed to begin OT this or next week, and we meet again with the counselor (help w/ behavioral concerns, social skills, aggression) next week. Also, Em has her sleep study next week--not looking forward to that!

It has been a difficult week for some of our CB friends. Please keep them in your prayers. I've linked their pages, if you'd like to sign their guestbooks. Thanks!

Taryn had a Gtube placement recently. She had some complications and is still having a lot of discomfort. We hope she is home soon and feeling better.

Taryn had to have her surgery postponed until 9/28 because she has an infection. We pray she stays healthy and that they can help her comfort level for the next 2 weeks.

Caden is having surgery this morning. We hope all goes well and he is home this evening. Also, his 3rd birthday is coming up and he has been learning all sorts of new things--like saying "hey" and "more" and sitting up!

Joseph is having an endoscopy & colonoscopy today. We hope they went well and the docs can figure out what's going on with his tummy soon.

Patrick began school again & that is very exciting. He is also having to some more seizures, we're praying his doctors can help those soon.

Morgan is having some difficult seizure days and still screaming for hours some nights, the doctors are not sure why she is in so much pain. She finally has a nurse to help her mommy out during the week, and that has been going well. We are so happy about that, and we really hope the GI doctor or someone can figure out why she's having the discomfort and help Morgan.


Thanks for stopping by!

Monday, September 11, 2006 11:02 AM CDT

Thursday, September 7, 2006 2:25 PM CDT

After Emma & I took Madi to school, we stopped at the park. It was actually not too hot, so Em was able to swing for a bit. She LOVED it! She was trying to hide her smiles from me...but finally, she let me see how thrilled she was to be swinging!






We are having a good week! I still can't get over how hectic our life has become with Madison in Kindergarten! Between our two girls, Josh & I have a very busy life!! Madison is doing great, of course loving every minute of school & making more friends that I probably had my entire childhood (lol!!). She is the MAYOR!! She is loving gymnastics, and will start soccer up once again this weekend. I think between her going to school & having sports as her OWN thing, she is very happy and not getting quite as stressed or anxious about things with Emma. Josh & his brother-in-law will be coaching soccer, so that will be lots of fun.

Emma has speech today & she is doing good. She can say words on flashcards & often repeat words, but coming up with words on her own is difficult. She is really making strides and we are SO happy! We are going to start doing more oral motor exercises. For whatever reason, she is becoming orally defensive again & having problems using her tongue purposefully. She took a bite of a soft taco today at therapy!!! We were SO excited. I could not believe she even tried it. Yey Emma! Her diet this week, no joke, has been primarily made up of Roasted Garlic Triscuits and some fruit chews. She has eaten some chicken nuggets here & there and drinking some juice. If you have not tried those Triscuits, imagine garlic paste smeared on a cracker--they are strong! Let's just say we have no fear of any vampires visiting our home. LOL!

Here are some pictures from a few weeks ago. The first 3 are a funny story--Emma and I went to Wal-Mart to pick up some of her foods (you know, college student diet! LOL!). I showed her Dora now had cereal & she wanted to hold the box. Shortly after that, she fell asleep. She had quite a grip on it! During check-out, I tried to carefully take it from her (still fast asleep!). Well, as soon as it was out of her hands, she was screaming & furious! The lady gave it right back. I gave it back to her & she fell right back to sleep. The next picture is of her in the parking lot, still sleeping & holding the box. I had to quickly put her in her seat (while she fussed!) reassuring her once I buckled her, she'd get the box back. Then there she is, asleep in her carseat--safe & sound, with her cereal box to snuggle. I was cracking up!!







This is Emma in her two favorite things lately--rain boots & a tutu. The tutu was one of Madi's, our neighbor calls it her "Ace Ventura" tutu, it really does look like it! Anyway, she has worn her boots & tutu everywhere. You can't help but laugh when she is all dolled up--oh, & very often she MUST have one of her small backpacks on as well.

Monday, September 4, 2006 1:15 PM CDT

Hello. Well, now that we have spoken to all of our immediate family, we can announce that the results from Atlanta are in. All tests were NEGATIVE! So, Emma at this point, does not appear to have mito or any of the other genetic syndromes Dr. Shoffner was looking into. She had some abnormalities (like her previous labs), but nothing that points to a specific diagnosis. So, we are relieved that it is not some of the really bad things they were looking at, but also a little disappointed that we are still unsure about what to expect. We, as well as Emma's doctors here, were hopeful to have a 'playbook' for Emma, at least some idea of what best to do.

At first, Josh & I were a bit shocked. We expected to have a diagnosis of something, even Dr. Shoffner thought he would find the answer. Then we felt a lot of relief, that the wait was over & that nothing scary was discovered through the testing. Then, after a few hours of letting it all soak in, we realized nothing had really changed. And, had we gotten a diagnosis, most likely nothing really would have changed then either. At least we can say that we've looked into every possible route for now. Dr. S said that if anything changes down the road, we could 'go back to the drawing board' & see if we can find a diagnosis. But, for now, we continue doing what we've been doing this whole time--take it day by day. I'm most hopeful now that we probably won't have to worry too much about Emma's physical health. We are more positive that she will continue to overcome those health issues & that her immune system will keep getting stronger as she gets older.

So, that leaves us with Emma's development & neurological status as our main concern. Her neurologist is getting a better picture of what parts of her brain are affected by her encephalopathy, there are things that could change in the future, but a lot of those would most likely be behavioral/psychological. Her seizures are well-controlled, & her tremor is not a concern, so we feel very good about how things are going. We just want Emma to be happy & comfortable in her life. Whether or not she is able to go to college, live on her own, or do whatever else is considered the 'norm' as time goes on, we really are not bothered by that. We have realized, these past two years, that how society defines 'success' is a whole lot different than how we see it. To Josh & I, everytime Emma does something new--no matter how small it may seem--that is success. We celebrate that everyday! She continues to amaze us, even amaze all of her doctors. It doesn't get much better than that!

Thank you everyone for your continued prayers & support. These past few months of waiting were really stressful. I know I've been in slow-motion, so I will slowly be getting back to emails, phone calls, etc. We appreciate all of our friends & family so much!!


* * * * * * * * * *


Another update--Emma had the 2nd meeting for her IFSP (the initial evaluation, I guess) on Friday. It went really great. I cannot say enough GOOD things about our service coordinator this time around. She is awesome!! I really feel like we have an amazing team working with us. Of course, it will only be until May. Our IFSP is a lot about transition to the school district. Once Emma is 3, she will not be in ECI, she'll get services through the school district. She will attend their 1/2 day preschool program, that is at Madison's school. Since school ends around her birthday, they will look into summer programs for us. I can't believe how big our Em is getting! Her birthday is 8 months away, but in our world, time FLIES by!! It will be here before we know it.

We are excited, it's only in the 80's today! It's raining, but we're happy about that too! This past week, we were able to play outside, Emma had some wagon rides, it's been great. We have had a very fun weekend, spending time with our neighbors, doing fun things with the girls, & Josh and I even went on a date yesterday!

HAPPY LABOR DAY!

Wednesday, August 30, 2006 0:46 AM CDT

Good news...

Emma is feeling better! Still some congestion & cough at night, but she was herself again today. YEY!

We saw the neurologist too & he said, yes, she does have a tremor. But, it is nothing to worry about. It is called an 'active' or essential tremor & he has never seen that type be a sign of any progressive neurological condition. We are SO relieved. It stinks because she will most likely always have a tremor--but it is innocent and that's really all we wanted to hear! He said if it starts to interfere with her ability to do fine motor tasks as she gets older, there is medicine to help it. We'll probably see it more pronounced when she is mad, excited, concentrating, etc. This, as well as the eating, & other concerns we had are all part of her encephalopathy. Most likely, she will always have those problems. As far as the feeding goes, he said we are free to try whatever therapy we think works. So long as she does not get upset. He said our goal is for her to see eating/drinking as a pleasurable experience and hopefully she will be more willing to consume. When she is older, we hope just telling her she needs to eat will be enough. As always, only time will tell!

Josh & I were so relieved about the tremor & also, her staring ('zoning out' as we call it!) episodes are more sensory related, he feels, not more seizures. YEY! So, we are to stay with her current dose and...DRUMROLL...don't need to go back for SIX MONTHS!! YIPEE!!!

This is more for other parents here who may experience this with their kiddos--I found it interesting. We talked about Emma's head-banging, how she'll hit the floor, cabinets, us, etc. and either laugh or not be bothered at all by it. The neurologist told me a doctor did a study once. When someone gets injured, endorphins are released, so the thought was that when people bang their heads, they do so because endorphins are released. In the study, they gave the patients a drug which blocked opiates/endorphins. The patients continued to bang their heads & self-stim. So, they literally have no clue why kids like Emma do that to themselves. I thought it was interesting, the study & all, & figured I'd share.

Well, hopefully our next update will be when we receive our results. FINGERS CROSSED! Thanks for stopping by!

Monday, August 28, 2006 10:34 AM CDT

Emma is doing better. She has slept a bit easier the past 2 nights, but is still coughing a lot & congested. Yesterday she was pretty miserable, just laying in our bed until 1 then went to the sofa & watched Blue's Clues and looked through books, napping on & off until Josh put her to bed around 6. Hopefully in the next day or so, she'll be back to her old self!

As I was typing this, I heard from Josh that he called Atlanta...they said to call back in 2 MORE weeks if we don't receive anything. He's in a meeting & sent me an email, so I'll need to see if they are getting us anymore info than that. Yes, I am getting aggravated, but it's not like I have anything to be mad at. An expert (who is awesome!) is gathering results on Emma to ultimately help her by finding a diagnosis. If he's waiting on Baylor for her chromosomes, well, that's essential and I can't fault anyone for that!! It's still VERY frustrating!! I'm trying to be patient, at one point over the summer, the receptionist said it could take up to 14 weeks because they were running behind. 9/7 is 14 weeks. I'd be anxious regardless, but with the tremor, it would really be helpful if we knew what was going on with Miss Em.

Yikes...so if you see or talk to Josh or I in the next two weeks and we have NOT received the results, don't be surprised if we are just a TAD frazzled or sidetracked!

At least we are finally getting some rain here & it's only going to be 93 tomorrow. Em may be able to get a wagon ride in! Thank you for checking in. Have a great week.

Saturday, August 26, 2006 5:12 PM CDT

Just a quick note...

Emma has croup & had a really rough night. Her breathing was terrible, but thankfully around 4 am & a few breathing treatments she was able to rest comfortably. She has a major runny nose & junk in her throat too, which is driving her crazy.

Denise took Madison for the afternoon & night, thankfully. So, she is having fun--they have some Cheetah Girls fun stuff planned. Madi was thrilled--and wearing her Cheetah top, of course! THANK YOU Denise & Julio!

Please say a little prayer that Emma has a better night & starts to feel better SOON. Thank you.

Friday, August 25, 2006 10:46 AM CDT

STILL no word... Josh & I are going nuts here! The first 8 weeks were no problem...then leading up to week 10 we were quite anxious...now we are just SO over the waiting!! We are trying to be patient, but honestly getting the results from Atlanta is almost all we can think about! Yesterday was 12 weeks, so if we do not hear by Monday, Dr. S's receptionist will speak to his lab assistant. As of 2 weeks ago, Anita said they were still waiting on the outside labs (chromosome analysis I know was done in Houston). Anyway...we are hoping the results will be in our mailbox ASAP!!!

To make this wait even more difficult, we've been taping Emma doing her shaking (Josh is dropping off the DVD to the neuro today, we meet with him on Tuesday), and also captured Emma zoning out a few times. We also captured a few other odd things...things that I guess we are just used to but are abnormal. So, we'll see what the neuro says about it all, if any of it is concerning. It was hard for the past week fliming that & then making the DVD. Our computer was being difficult, so I had to basically make the DVD TWICE! So, for two nights, all I was watching was Emma shaking, staring, etc...doing things that worry us. So glad that is over finally!

And now, miss Emma is sick. Madison has had a stuffy nose for the past 2 days, which we figured were allergies. But today, Emma woke up out of it, major runny nose & just miserable. She is asleep in my lap right now. She just wants to be held today, poor baby.

Between that & the results not being in, we are just a tad stressed here!! Thankfully the girls fill our days with laughs! Madison LOVES school, she is making friends & having such a good time. She received a medal last week after her last soccer game (of this season), she was THRILLED! Emma likes having some one-on-one time with me during the day, but she LOVES going to pick up her sister from school. It is still 100 degrees here...we cannot wait until we can really play outside again. The girls are anxious to go on a wagon ride!

Okay, off to attempt to make Madi a peanut butter sandwich while holding Emma. It's a bit more challenging now that she is nearing 30 pounds & growing!!! Everyone has been asking if we heard yet, so figured I needed to post. Obviously, when we do, I will update. I am past due on emails & cb visits, SORRY! The weight of all this, plus being busy with the kids, it's been tough finding time! We'll get back on track here soon enough. Thanks for stopping by. There are some recent pix in the journal history. I'll be re-doing her site here too before too long, with new pix. Please sign our guestbook, we all love reading your notes! THANKS!!!

Friday, August 18, 2006 6:03 PM CDT

Some pictures from the past week or two. There are 2 from Madi's first day of school, one from Jacqueline's birthday party, & some others.

Things here are good. No news yet. Josh called & spoke to Dr. S's office. If we do not hear anything by end of next week, then we can call her back & she'll speak to his lab assistant. Like I've told others...we've waited 2 years now, what's another couple of weeks?? Still, we'd love nothing more than to see the results in our mailbox ASAP!

ECI came out & we LOVE this office (the zip code switched offices), the people are all great! They are going to have a speech therapist come to work on oral motor & sensory issues (w/ food & textures, etc.)(now Emma's private ST can work strictly on communication, this is so great!!), a nutrionist, OT for sensory (& some fine motor), and a behavioral specialist. We are really excited, I think it will all be great for Emma. I'd love to see her eating some more, not sure if therapy will help that. I am so happy that our services coordinator is so sweet & on the ball. PHEW!

We have taped Emma's tremors & the neuro will watch it next week. Then we'll know the next step. Her GI is having us cut her night feeds by 20% & then follow-up in 4 weeks, to see if her weight gains stops, or at least slows down. GOOD NEWS: her infection was NOT staph!!! It was a 'normal' abscess. It was painful so that stinks, but we are SOOO thankful it was not MRSA again.

Madeline is doing better, thank you everyone for your prayers. She was able to come home last night. YEY!

Here's a cute video of the girls singing in the rain! It FINALLY rained here last weekend. We (our neighbors & us) all probably looked a bit silly, we were all on our porches, so excited to see rain falling from the skies. It's been a HOT, dry summer here (like usual!). Anyway, the girls REALLY got a kick out of it. This was Emma's first time playing in the rain--think she enjoyed it? I love seeing her copy her sister, it's very adorable.



Have a great weekend! Thanks for stopping by!

Sunday, August 13, 2006 5:52 PM CDT

Hi. Please keep our friends & their daughter, Madeline in your thoughts & prayers. Madeline has a metabolic disorder, & she had a stomach bug this weekend and is now in the PICU. The name of her disorder is escaping me at this time, but when she gets sick, she goes into acidosis very quickly and her other levels get out of whack. So, they are working with readjusting the IV solutions, to get the right balance. Please pray she gets to feeling better & they are home soon. THANK YOU!

Josh is on his way to visit with her parents (Josh has been friends w/ her father since high school). The girls are sitting here with me, watching some TV and coloring. I wanted to get that request up here.

Other than that, things here are good. NO NEWS yet. I'm going to call Atlanta tomorrow & just see if they can give me a timeline. Originally we were told 8-12 weeks, but then 2 or 3 weeks into it, Dr. S's receptionist told me it could be more like 12-14 weeks. I guess because summer? Who knows! We're trying to stay BUSY so the time goes by.

And, busy we have been! Madison is LOVING school. She can't wait to get back tomorrow! It's so great to see how excited she is for school. She & her team were AWESOME out there today at her soccer game. We also had Jacqueline's birthday lunch today too. LOTS OF FUN!

Emma is doing pretty good. She had another staph infection, on her tummy again. She's back on oral antibiotics & topical. Her tummy looks a lot better, it was horrible having her go through the draining again--that is the worst. It's much better now--only her bottom is REALLY red from the antibiotics & diarrhea.

She is also still doing some shaking. We're going to videotape the episodes this week & have the neurologist look at it. He wants to see what it looks like, it's not like the twitching she has done before (that we assume is seizure activity). Hopefully he can conclude something from the videos--her sleep study is not until the end of September (they were hoping that was sooner--to see if she is having seizures or what when this happens). Some days she'll only tremor a little, other days it's very obvious and she is very shaky. She is alert when it happens, she will be active too. Who knows.

Emma is also still having some leg, foot, back, & head 'aches' on and off. I guess that's what they are. She will get upset & point to one of those areas & either say or sign "boo-boo." After a little while, she's fine again. Always keeping us guessing!!

And, we do have some solid proof--I guess you could call it that(!), that Emma's brain is not signaling hunger or thirst to her. Her feeding bags have been remodeled. Well, you have to use ALL your might to get them to close properly into her tubie. Josh connected her two nights in a row & both times, they came undone. So, for two nights in a row, she did not get her tube feeds. (He has since put me in charge of connecting them!) On both days, Emma did not eat or drink any more than usual. So, we now know that her nighttime feedings are not interfering with how much she will eat or drink during the day.

I have TONS of cute pictures--will get them on ASAP! Emma has slept in HER OWN room now for a week! YEY FOR EMMA!! We are so very proud of her. She loves having her own room.

Wednesday, August 2, 2006 7:25 PM CDT

Not your typical "before & after." No, here we are HAPPY to have a bigger after!!! This is Emma in April & now this week, in the same outfit. You can see how she has grown (both up & out!! LOL!). 3 pounds in 3 months...plus about 2 inches too!!

April 2006


July 2006



Thought everyone would get a kick out of that. I know I did when I saw how different that outfit fit. While Em is still wearing 12-18 months clothing, by fall she should be in 24 mos!! That is phenomenal--Emma usually wears one size for at least double the intended time (we have WELL gotten our money's worth on her wardrobe!! LOL!). Anyway, it sounds like a dumb thing, I'm sure...but it's exciting that we'll be buying the next size up here before too long!! GROW EMMA!!

Some have asked how we/she is doing it. No idea!! She is eating/drinking about 200-300 calories per day by mouth max, the rest is her tube feeds at night. She only gets water through the tube during the day, because she is gaining so furiously. So, no secrets, no calorie supplements to share! Her body finally just took off--and in quite a way.

Also very exciting--I think we're going to get Emma some regular shoes this week (w/ high ankle support) & see how she does. She seems to be doing fine (as you can see, barefoot above) without her AFOs. She still is a bit clumsy, but she most likely just takes after me. LOL! Seriously, I think her falls are coming still from some low tone in her torso & balance issues. But, her legs & ankles are not moving back & forth and rolling they way they have been this whole time. Anyway, it will be great if she doesn't need her AFO's anymore--for lots of reasons, but especially because of the 100+++ degree days we are having here!

Two more things... I'm going to email Caring Bridge to see if they can archive both in the guestbook & journal entries. I went to both tonight & it takes a long time to load. Also--I still cannot get into other CB pages that have an "ActiveX" control on them. Not sure if it's an animation or what...but I know Collin & McKayla's pages I am not able to get on (Explorer has an error & shuts down!), & there may be others. Just so you know, I would like to leave a message for ya, but we can't.

I'm going to try & FINALLY make a montage of Emma's birthday party. We have lots of great pictures. So, I'll put that up as soon as I do.

Well, hopefully Miss Twinkle Toes sleeps better tonight. She was up for a few hours last night (12-3 am), just wanting to snuggle & smile. She was content to watch TV (the only okay thing for her was a documentary on lighthouses!!) & hang out. When we tried turning the TV off, she was not a happy camper! So, we left it on & eventually she finally did give in & go to sleep.

Thanks for stopping by. We love reading the guestbook messages!!! I'll post pictures of Madi's first day next week! And, OF COURSE, if we hear anything from Atlanta, I will post it!!!!! Yes, to say we are a bit anxious would be the understatement of the year!

Monday, July 31, 2006 9:13 PM CDT

Well, we are ALL recovered from the bug! Today was the first day no one had a stuffy or runny nose!! YEY! LOL!

I took Emma to the Sleep Clinic at Children's. She will have a sleep study done, we'll get a phone call to schedule it, I'm guessing in the next month or so. The doctor was very nice, so that was good. He said the test itself will not be fun (of course), that she will hate the leads & everything. But, he thinks it's important to see what things look like when she sleeps. Her adenoids & tonsils are enlarged. If she does have apnea, they would remove those.

Em had speech today too. She did pretty good. We're going to work a lot on her biting with her front teeth. Her therapist isn't quite sure why she isn't doing it, but said if we make a game of chomping on cheetos, her NUK brush, etc. that it will help. We are also going to work on having Emma combine words. On occassion she will say "okay ma" (VERY CUTE!) & we have also heard her say "bye Honey!" once. So, we need to consistenly have her putting 2 words together. If after she is able to combine words & expand her vocabulary, her articulation is still not good, we will then work more on that. So, basically, if she has a word for something, however she says it, we'll accept it as that & not focus on the real pronunciation. I'm glad about that--I think at this point she thinks she is saying the word correctly anyway. So, when we reiterate a word, I don't think she understands why. Anyway, I'm excited she is moving onto a new step in speech! We've been in a lull for while, but I'm thinking maybe it was because of the focus on articulation. I'll keep everyone posted on Emma's progress with putting words together!

We'll get to see Emma's Aunt Denise tomorrow & then getting together with our neighbors on Thursday. Emma will get a tour of the school. I think she'll like it a lot. ECI is coming back out this week as well, we need to write up a new IFSP & begin OT through them again.

OH! I completely forgot to post this: Emma is 28 pounds. YES, 28 pounds!!! She is the defenition of a butterball! I laughed today when the doctor said "And she has a history of failure to thrive?" I couldn't help but laugh as I held her, in all her beautiful chubbiness! Even I can't believe how big she is now & how much she is growing & gaining. We're even reducing her night tube feed amounts. As much as we had hoped she'd no longer have her gtube, it is making all the difference.

Josh is off next week. YEY! Madi has her FIRST day of kindegarten. WOW!! We are all very excited. We're hoping to do some fun things, hopefully get some pool time in too. I think Emma will enjoy that. I'll take pictures. Have a good week! Thanks for stopping by.

Thursday, July 27, 2006 8:23 PM CDT

Good news--no ear infection! Emma does have something that is causing pain, similar to when the pressure changes on an airplane. So, we'll just use a prescription decongestant & saline to help clear that out. We were very glad her ears & tubes look good.

Thank you everyone for your sweet words in the guestbook, & it is very comforting to know there are others who can relate! Thank you also for the emails!

Well, here is a VERY cute video of Miss Emma aka Disco Diva!! This was taken while my sisters were in town (June!), & I kept meaning to share it. She is dancing to "Wheels on the Bus" & then "Head, Shoulders, Knees, & Toes," this is followed by a little "Toddlers Gone Wild!" -You'll see! Anyway, you are guaranteed to laugh! Thanks for checking in!!

Wednesday, July 26, 2006 9:26 PM CDT

OKAY! So, I know we are way overdue for an update. Be forewarned, this one makes up for the lack of 'em! Quite long, sorry! There has not been much big news, & this past week we have all been sick. I had fever & felt pretty yucky until today, the girls are now both sick. Madi is recovering but Emma will see the doc tomorrow, we think she may have an ear infection. Now, it's Josh's turn, he's feeling bad today. Well, you can't say we don't do a lot of sharing in this family! Ha!

There really is not much to report. I know I am getting more anxious to receive the results from Atlanta. We were doing great for a while, but now as we get closer to our 10 week mark, it's getting more nerve-wracking. We're lucky--we've had preparation for Madi's big start of Kindegarten to keep us busy & of course life in general to occupy our time!! But, when we have a moment to think, our thoughts surely wander to Atlanta. FYI...August 10 is our 10 weeks exact, but we've been told it may take a little bit longer. So, it could be late August before we have the results.

The only other change in Emma is her behavior. I've held off on updating on this, for lots of reasons. But, then I realized this is all part of Emma & what issues she faces and we deal with day in & day out. She is having fits--screaming, on the floor, banging her head, just all-out fits that we have no control over. Nothing works to calm her down. They can last for quite a while, & on a bad day, she'll have several. They are not typical toddler tantrums, they are very difficult to watch as a parent--she turns colors, hurts herself, kicks, bites, seems to not even know where she is & can not be comforted (until something happens & suddenly she'll be okay--there is no pattern, nothing we do seems to help/change). It's been hard on all of us, especially Madison. We got Madi a cd player w/ headphones today (doc recomendation) for Madi to put on when Emma has a fit. Emma is also hitting Madison & being very aggressive with the dog, which we are working on. She screams, throws stuff. Just has some really hard times during the day. We've pretty much given up dining out. I also can't really go out with both girls anymore to a store. Emma throws a fit if she is in the stroller or cart for more than say 10 minutes. When I let her down, she walks off. She has no fear, & being not very verbal, I can't hear where she goes. Then, if she has one of these fits in public--woah! People stare at me/us in two ways: one, "What are YOU doing to that child???" & "Why don't YOU do something with THAT child??" People give us many looks & they just don't get it. Emma looks fine on the outside, so to see a child retching & screaming & banging her head on the floor is not something people get. They figure she must be spoiled or we're bad parents. Josh & I are making special time to take Madi out. We're also visiting with neighbors & family. Emma does pretty good at familiar houses. But, she ultimately seems like a ticking time bomb, you never know what will set her off. Lack of communication is a big part, as is sensory. And, the rest of it, well, it's something that happens in Emma's brain. Emma will start back with ECI for OT, focus on sensory integration. This way, the therapist will be at home & can also meet us in public places, to devise a plan (if possible!) to best help Em. We are hoping to get some coping tools so that Emma's try at preschool is a successful one (btw...she is set to start on Aug 15, & our neighbor is the Director, & has just been awesome, really tailoring things to Emma). She's still not eating much, pizza & french fries are about the only thing we can semi-guarantee she'll snack on. We've also discovered she is not biting with her front teeth. She pushes the food to either side of her mouth. The ST is going to try & figure this out. Well, life has never been boring with Emma, & this is all just another turn in the road. With most kids, a simple hug or stern voice, depending on the situation, will work wonders. Sometimes even bribery is the magic trick! It can get defeating when as a parent, you are suddenly out of 'tricks.' Anyway, like I mentioned above, I had a hard time writing this. Emma is so sweet & amazing, and just such a gift. I hated to write about this--but then I realized I'm not saying my child is 'bad.' She is not, she has neurological issues & this is a symptom of those. It's important to realize that difference--these issues are a part of what Emma has, just like her delays, feeding issues, illnesses, etc. We are so thankful that Emma's physical health is getting better & she is doing so good. I didn't want to seem like we were griping over having to deal with 'behavior issues' when other parents are dealing with so much more. I hope it didn't come out that way. We are blessed & we are so thankful each day for both our girls.

Well, enough of that! I've got some pictures from the last couple of weeks. Emma still loves saying "argh!" & being a pirate. I will get it on video! She also has the BEST manners of any 2 year old I know. She is the FIRST to say "ank u" when you hand her something. She signs or says "pease" lots too! And, must have a napkin while dining. Miss Manners would be so proud!!

Some sweet shots of the girls....



This slideshow has some cute pix. A funny shot of Madi, Josh & the girls reading books at bedtime (so sweet!), Emma all wrapped up in her froggy towel (she's still our little baby!), Emma fullfilling her dream--"driving" a racecar(!!), & the pizza ones are from tonight. Emma has really not ate anything for almost a week now, but DUG IN to her pizza tonight. YEY!! Of course, with her tube feeds, she's getting plenty of calories & fluids, so no worries there. And you can see by the pix, she is becoming quite our little royal chubbiness. LOL!




Thank you for coming by & checking in!!!

Wednesday, July 12, 2006 10:07 PM CDT

Hi there! All is well here, Emma is doing GREAT!! Emma has not been sick, and that has been such a blessing. The last 2 months or so, she is really getting strong & healthy. It's really awesome. The doctor increased Emma's trileptal a bit, that has helped with her not sleeping & headaches again. That's been a relief!

Her latest thing is pirates! We were walking in Target a few weeks back & she spotted the Pirates of the Carribean toys & just loved them! Don't ask! So, I told her they were pirates & then I said "argh!" Well, now she is saying "ARGH!" It is so cute. If you ask her if she is a pirate, she will slowly nod her head. Too funny! Of course, she is still loving Blue's Clues and cars (car rides, toy cars, arcade car games, anything cars!) too. What a combination!

The girls continue to keep us busy--soccer games & birthday parties--fun stuff!! Our neighbors had the girls & I over for dinner tonight (Josh has class), they had fun playing with Lauryn (she just turned 1). Emma REALLY loved their slides and swinging!! I'm real excited, I think we found a preschool program for Emma. Our friend & neighbor is a teacher there & she was telling me about it. It's a small program, & of course, knowing our she is there makes us feel 100% comfortable having Emma go. She's not eligible for the school program through the state until she is 3, so this will be wonderful for her.

That's about it from here. We're trying to stay cool (my car registered 108 today! UGH!). Madison's having a blast with soccer. I have some great pix to post, will do that soon. We're about 4-6 weeks or so out from getting the results from Atlanta. Thanks for stopping by!

Sunday, July 2, 2006 11:40 AM CDT

Tuesday, June 27, 2006 10:38 PM CDT

NEWS FLASH! EMMA JUMPED!

Yes, BOTH feet off the ground. We are SO proud of her!!! She's had the whole upper body jump going, it was just getting off her feet. Trampoline & bed-jumping time paid off!!

We had a great weekend. On Saturday we went to Stephanie's Day at the mall. It was great! Josh & I got lots of info on schools, therapy resources, IEP & financial planning, etc. Even better, was all the fun stuff for the girls--face-painting, a juggler, music, puppets, games, & more. I've got a stack of papers I've been going through, regarding different styles of therapy, preschools, playgroups, etc. It was nice seeing that there is a lot of help out there for special needs kids & their families. This mall also has a carousel, which BOTH girls loved! Emma hated it last time, but this weekend LOVED it!!! She's been quite the rascal--wants to run away from you & has no fear. We laugh about it, but honestly it's getting too difficult for me to be out with both girls. With Emma, we need a 1:1 ratio!!

On Sunday, it was Emma's friend, Samantha's 2nd birthday. We got to celebrate the big day & have fun--both girls have come so far this past year! Lots to celebrate! Emma especially loved swinging in the shade!

She is feeling better, the culture was + for MRSA, but this one has healed WAY faster & better than the last. She still has a scar/mark on her knee. Her tummy has a teeny mark on it, that will be gone in another day or two. I'm SO glad we got this early this time around & she's recovered SO quickly! Em had ST yesterday & she did really well ONCE she decided she was ready for speech!! She really enjoys the flashcards--but you should see these looks she'll give the therapist. Her eyes & expression seem to say, "do I really HAVE to say it???" or "of course I CAN say it, I simply CHOOSE not to!" Her personality comes out more & more each day! She had her re-eval for OT today & did very good. Her fine motor skills are about up to where they should be (YEY!), with some issues with grasping. But, that is mainly something that she needs time for. We'll meet again next week, & talk about her sensory issues. Her OT & I may come up with a home-based program for now. We're trying to save up our paid therapy sessions for speech (Emma's biggest need & delay). Depending on how things go, we may need to start OT (for sensory integration) with ECI in the next few months. We are hoping to continue in private speech (covered by ins) for a while. Emma can say more & more words--if you are using the flashcards/visuals. She still signs, especially if she is tired, around a lot of people, etc. She can consistenly say about 10-15 (!!WOW!!) words on the average day, on really good days up to 20, some bad days she doesn't say much at all. We know, because we've heard her say them, that inside she has A LOT of words, it's just very hard for her to get them out. If what she is trying to say is not in front of her, a picture, object, person, etc. she has a very difficult time getting that word out. And, I think sometimes she knows what she wants to say, but signals get crossed inside, & she just gets so upset, and has a total meltdown. You feel so bad when this happens, & I know it must be so frustrating for her. She'll get there, though, day by day!! Still no changes on the eating front, but we've accepted that for now that is just the way things are going to be. She is getting BIG thanks to the gtube, so that's what really matters. We'll discuss her eating/drinking with her neurologist next month at our follow-up & see if he feels this is a long-term thing, if at any point we can try more of an ABA-style therapy, etc.

Madison has her FIRST soccer game this weekend! That is exciting! GO MADI!







The face-painter was AMAZING!!! Madi's dolphin was just awesome, AND she was able to give Emma a real pretty heart in under a minute!! She was a pro, for sure! We were very proud of Emma getting her arm painted (after watching Madi get her face done, she nodded yes she wanted her arm done). What a big girl!

Thursday, June 22, 2006 3:28 PM CDT

***Pix in Journal History from our Wagon Presentation!!!***

Yey! Emma's tummy looks A LOT better! What a relief! We saw the pediatrician and she is so happy about how much better the infection is. We'll continue with the treatment plan. Emma is feeling better--she took almost a 4 hour nap yesterday & was still crying out F& up at night. But, today, she is back to her silly bee-bopping self!

I feel awful, I forgot to add that The Gable Family generously donated A LOT of batteries for Emma's birthday, for Medical City Children's (playroom toys). They are perfect for the hospital. Thank you guys so much!!

Madi starts soccer practice tonight. We hope that her playing soccer will be 'her' special thing. I think big siblings (regardless of age!) take on a lot of stress & it affects them a lot. So, we are taking some steps to see if we can help. We're also working on stretching our days out to 48 hours, so that we are guaranteed enough time for everyone & to do everything!! LOL!

Her first game in July 2nd, so I'll post some pix. Her team is the Little Kickers (FUNNY!). She so far is most excited about her hot pink ball!

On Saturday we are going to "Stephanie's Day" at the mall, they will have a lot of special needs resources, & we're hoping to get a lot of information. I'm interested in preschools, IEP info, & playgroups. They'll have face painting, a band, etc. So, the kids will enjoy it as well. Plus, the mall has a Disney store & a carousel--what more could ya want???

Have a good week!

Tuesday, June 20, 2006 9:58 PM CDT

Today was (finally!) our wagon presentation day!! Emma enjoyed the maiden voyage of the Radio Flyer wagon!! Because of your generosity, Medical City Children's now has a new & awesome wagon, LOTS of new DVD's (their biggest need!), & some neat new toys (bubbles too!!) picked out by Madison & Emma. Josh & I picked up lots of tasty goodies for the pediatric & PICU nurses--cookies, muffins, & other yummy snacks! You can see some of the fun stuff in these pictures. It was a wonderful thing being able to present the Child Life Team with all of that. They were so appreciative.



We'll now get to play "I Spy" for Emma's wagon when we are up there for doctor's visits...they'll put Emma's name on it. Perhaps the next one we donate will have "Little Tough" on it!! I think this was the start of a new tradition here at the Markham house, even Madi really got into it. She loved shopping for the toys & DVD's!



From the bottom of our hearts, THANK YOU! It was an amazing feeling presenting the hospital with these gifts...to actually be able to pay back in some way was a gift to US! We know the wagon, DVD's, & toys will all be put to good use & be such a positive impact to so many of the kids in the hospital. You all made this possible...we can't thank you enough!

Thank you....

Gladfelter Family
Reynolds Family
Pequignot Family
Williams Family
Mr. & Mrs. Jones
Diesso Family
Cucci Family
Fernandez Family
Nanny & Grandpa
Steve Baker -- To Eli's Angels
Markham Family -- To Eli’s Angels
Please, if you made a donation to UMDF or Eli's Angels, email and let us know! I may have accidentally forgotten someone, I apologize if I have!! It's been one of those days... Thank you also to everyone who surprised Emma with wonderful presents, some even by mail!! She is enjoying all of them, & I promise, thank-you's will be in the mail SOON!!!

Monday, June 12, 2006 5:01 PM CDT

Hello...

Emma had her endoscopy today & there is no infection in her esophagus or tummy, her fundo looks great, etc. Our GI doc said this was one of those cases where he was hoping to find a treatable infection. Then we'd know why Emma's eating has declined these past couple of months. So, we now know it is neurological. It is of course a concern, because Emma had done well for a while with her eating--not ideal, but she was eating a lot more. Now, her drinking & eating is so limited. He was very glad we went to Atlanta (he actually knows Dr. S--small world!!), & especially after today is anxious to find out what Emma's dx is.

Emma did wonderful in speech today--a shorter visit because we had to go to Dallas for the endo, & no eating because of it. But, she held the new therapist's hand--WOW! We need to work on pronunciation of the words Emma does have (she'll only say a part of a word), & get her mouth to move the right way. She's doing so awesome! We're so proud of her!! Em is becoming a social butterfly--giving hugs, being held, & sitting with her aunts, etc. A BIG achievement for Emma!

My mom did great--her cath went well, they are going to switch around her meds to see if that helps the chest pain.

I had a terrific weekend, all of my sisters were here. We had a girls' night out (dinner & hotel stay too!), & then spa day on Saturday. WOW! Thank you Josh!! The girls had lots of fun (& were spoiled, I'm sure!!) with Daddy. My sisters & I all agreed that was the most relaxed any of us have been in a loooong time. This was the first time in probably over 8 years since we've all hung out for that long, just us 4 (no kiddos to chase!). Lots of fun!!!

Emma has OT tomorrow & then we are delivering the wagon, dvd's, & toys later this week. Madi wanted to be there with us (she has helped pick out dvd's) and we were not going to take her for the endoscopy. So, Josh is looking over his calendar (probably Weds)...we'll take lots of pictures!

Have a great week. Thank you for stopping by to check in on Emma. Please sign the guestbook & let us know you were here!

GO MAVS!!

Tuesday, June 6, 2006 7:17 PM CDT

Wow!! Lots of good news. And, lots of relief!

First, the ID doc thinks Madi's abnormal test results are not a big deal at this time. They could just be normal for her. YEY! So, we're just to continue monitoring her symptoms, if anything changes, etc. she'll see a rheumatologist. PHEW!! I can't tell you how relieved we were. It has been a long week leading up to the appt & we've been so worried.

Earlier in the day, Emma had OT & PT. She did great. She enjoyed herself a lot--she makes up her own obstacle courses (LOL!)...she'll do the slide, then walk around the gym, then she wants to go up & down the stairs, then by the trampoline, back to the slide...over & over. She got to swing for a bit--but the highlight was that she FINALLY was able to ride the bike! For months & months now Emma has passed the bikes in the hall & goes to them, we knew she just wanted to get on & go for a spin. We've tried before, but she was always too short. Well, now with her new DAFO's & bit of growth, she was able to get strapped in & go for a ride. The biggest smile on her face as she was pushed along! Too cute!

Even better news for us was her PT re-eval. She has MET a lot of goals!!! And, the progress she has made in the last 8-9 months is amazing. At 15 mos, she was in the 9-10 month range for her gross motor skills (stationary, locomotion, object manipulation)...BUT NOW, she is at the 18-23 month range for those!!! That's a LOT of progress! We are SOOO proud! She'll go again in 2 weeks & then we'll probably be ready to do monthly. AWESOME!!!

Denise watched Emma when we went to Madi's appt. Thank you!! Emma had fun, she got to play with her cousin Jacqueline. Madi is over at Honey's tonight--Mindie & the kids are in town, so she is having a fun sleepover. Josh is trying to get Miss Emma to bed now--she's a bit hyper today!! And, now very overtired. Oh boy!!! Glad he's got bedtime duties tonight!! LOL!

Thank you Joseph & Elizabeth for the giftcard! Emma loved it! We'll take her shopping this week--let ya know what she picks out!!

We are having a really good week, of course! We do have some prayer requests:

Please keep Joseph S. in your prayers. He has been having seizures lately & the docs are trying to figure out how to help him. His mom & family have been so sweet to both our girls, they pray for Emma each day.

My Mom goes in for her catherization tomorrow. Please pray they find nothing & she just needs her medicines switched around. She got good news earlier this week from the neurologist.

Thanks!

Monday, June 5, 2006 1:52 PM CDT

Emma said "muh buhba" in speech today--MORE BUBBLES!!! YEY! She did so great--despite the fact that we started with a new therapist (ours is on maternity leave). We weren't sure how Emma would react, & it's been a month since she's made it to ST (sick & Atlanta). She sat in the chair just fine (that's a first!). She loved doing the flashcards, ate some crackers, & had a good time!!

At the end, the therapists blew her bubbles & had her pop them. When they were gone, she'd prompt her to say "more bubbles." We'd either get 'muh' or 'buhba' but not both together. Then, under her breath, she said it together!! GO EMMA!!!

That's a GREAT way to start our week!!! Em has OT & PT tomorrow, & then Madi sees the ID doc. Cristene & Carla (my sisters) come at the end of this week, we are all getting together to celebrate Denise's birthday. I'm looking forward to some time with all my sisters together.

Well, I just had to share Emma's big news today!! I'll update again after Madi's appt.

Sunday, June 4, 2006 5:07 PM CDT

Hi! We're having a great weekend. YEY! Yesterday we mainly hung out at home, Madi & I (okay, pretty much just me!) organized her room (quite a feat!) so it looks great now. All Emma wanted to do yesterday was sit on the couch & look through books. She was happy doing just that. The Mavs won last night--so Josh was ecstatic!!

Today, we had lots of fun! This morning, we loaded the girls into the wagon & walked to the new donut shop. Emma ate FIVE donut holes. That is her record!! She sometimes will eat one or two. But, today, FIVE! They had a cute little kids table & chairs set up so the girls sat there, Emma would eat when no one was looking. Too funny! She kept putting her hand up for more. After we got back home we headed to the science museum. The girls both enjoyed themselves. They had a lot of dinosaur displays--Emma made lots of mean dino sounds (VERY CUTE!). Madi & Josh dug up some dino bones. We all really enjoyed ourselves! Josh & I thought about it--it has been more than a month since we've been out as a family like that. We kept Emma in the whole time leading up to her biopsy to keep her healthy. So, it was really great having a family outing.

Our car thermometer read 103 today! We're going to have to come up with a long list of fun indoor stuff to keep us busy for the next few HOT months!

Thanks for checking in on us. My pity party (lol) is over. There's nothing we can do to change things right now. And, only time will tell what is going on with the girls & what we need to do, etc. We are staying positive & patient!!

Some pix from today (a little blurry--taken w/ my phone)

Friday, June 2, 2006 10:12 PM CDT

Before I forget...we were going to bring by the wagon, ride-on, batteries, & DVD's (galore!) next week. But, we found out today that Emma will be having an endoscopy done on the 12th...so we'll just save us the trip & bring everything that day. We are so excited!!! I still can't get over how much we were able to donate--THANK YOU!!!

Emma is feeling MUCH better. Her incision looks great, we had our follow-up with her pediatrician today. She has just been cracking us up lately! It is still the best thing in the world to see her sign "I love you"!!! That & her hugs and kisses too!!

Madison's labs are back & her ANA is positive, as is the SCL-70 antibody. We see the ID doc on Tuesday to get more info. That antibody can be a marker for scleroderma, but apparently is also seen sometimes in other connective tissue disorders (autoimmune), what the ID doc was looking into was dermatamyostis (sp?). She's still running her fevers, has a nasty canker sore in her mouth, & her tummy is still giving her trouble. I really felt like my head was spinning non-stop this week. I know we will get through this & there are many families going through much worse. It still wore me out! I'm just praying that one way or another, we'll have some answers for both girls by the end of the summer. Once we talk to the ID doc, we'll forward this info onto Dr. S. to see if he feels there's any way Madi's symptoms are really mito. I think with these new test results that makes it less likely. He did suggest having her immunoglobins checked, so with her next round of labs we will do that. The disease the ID doc mentioned is in the family of MD--as is mito. I know Emma's symptoms are nothing like Madi's...Madi was 100% healthy her first 2-3 years, & the only problems they have in common are their GI issues...BUT, it just seems weird to me that we'd have 2 daughters with 2 totally separate conditions. I'm sure it happens though.

And, I have to add...because it's something we've thought about A LOT & even asked all the docs about--could any of this be because Madi is under stress or seeking attention? The answer is no. Yes, she can be dramatic (diva!) & her life has been altered, but the docs don't see her as being under 'stress' & her labs & fevers would not be so just because of stress or anxiety. I actually feel pretty bad because I think I've held off on going back to the ID doc & all because I did wonder if she was saying things hurt or she couldn't walk, etc. just to get attention. But, then we started monitoring her fevers again, & they did the labs. Plus (I have to keep reminding myself), this all started before Emma was even born--the fevers, aches & pains, etc.

You don't want anything to be wrong with any of your kids...but I really wanted Madi to just go through life skipping along without too many cares in the world. She deals with enough as a big sister...but to be in pain, & have to take medicine & get tests done herself--that just is not fair. Needless to say, I've been hugging Madi so much this week--snuggled with her in our bed while she goes to sleep & even had her sleep all night in the bed on Weds. I just want to hold her & make it all okay. Sorry to go on & on...it's just been a bad week.

I was nearly emotionally spent by last night, but had a few good cries in private, & plenty of hugs from Josh & the girls...and, well, their laughter is the BEST medicine!! Josh & I decided that our batteries are spent & we are now running on vegetable oil!! LOL!

My mom sees the neurologist on Monday for her MRI/MRA & EEG results (PRAY FOR GOOD NEWS!) & her catherization will be on Weds. Hopefully everything will look good & she'll just need her meds changed around.

Not enough good news this week, FOR SURE! Certainly, that means we'll all be getting GOOD news next week!! Thank you everyone for your prayers. If you are still reading this, then you deserve an award!!! My apologies for this rambling. I have to say, I do feel much better now.

Hope everyone has a good weekend. Josh & I have decided that WE WILL! We're taking the girls for a wagon ride to the new donut shop tomorrow a.m. & then will head to one of the museums for some fun.

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