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Tuesday, February 5, 2008 8:55 PM CST

The Pulmonologist's office called today with the results of the sleep study from last Thursday night.

They compared the sleep study from October of 2006 and the current one. Makily's apnea has gotten much worse. :-(

The nurse said that she has oxygen desaturations down to 73 percent in her sleep (last year the lowest was 89�and that she is NOW considered to have "obstructive sleep apnea". I didnt ask her how many central apnea episodes she had because I was sort of surprised that the sleep study was worse. For some reason I was convinced it was going to be resolved. *sigh* This kid really keeps me hopping.....seriously.

The first suggestion was to go to the ENT and have her evaluated to have her tonsils and adenoids (T&A) removed. This annoyed me a little because that is what they suggested back in Oct of 2006. We went to the ENT, he did a bronchoscopy with largyngoscopy and said her T&A were VERY tiny and so he left them alone. He said there is NO WAY they were causing the apnea episdoes during sleep. We had a follow up with the pulmonologist after that and they said that we would just do repeat sleep studies every year to monitor. They said there wasnt really much that could be done at that point because that sleep study was borderline. I guess they didnt remember or read the chart that would have told them all that :-(

I reminded the nurse and she said "Well then, she needs to come in for another sleep study with C-PAP trial to see if that resolves the apnea".

It's insane Allen just got a C-PAP machine last week and now baby girl looks like she is going to have one like Daddy. I told my mom I am going to be in a house surrounded by "Masked Avengers".

Allen will be home tonight and we will figure out when we are going for the sleep study. I am not excited about doing it AT ALL. Makily hates all those wires on her and it takes so long to get her all hooked up. I hate that we have to do it again so soon.

It's also no fun for Mommy sleeping in a recliner (well not sleeping).

We have an appointment with gastro on Thursday to discuss her last set of x-rays. I also plan on talking to him about possibly putting Makily on liquid/pureed foods through her tube. I have another Mommy recently suggest that to me as she had a lot of the same problems with her son. She said that switching from just formula to "food" REALLLLY helped her son with "regularity". This will have to be done with the help of a nutritionist because I have NO IDEA where I would even begin with that.

Sunday, January 27, 2008 8:47 AM CST

Makily has some appointments coming up soon.

Thursday Jan 31, she has an appointment for a sleep study. It's really a follow up from the one she had last year. Hopefully the mild sleep apnea she had has gone away. I am curious to see if the pulmonologist will say she can come off the apnea monitor. Although I am not sure how comfortable I will be with that?

She also has an appointment with Gastro on February 7th to go over her small bowel follow through and upper GI results. Makily still retches quite often and has constipation issues and I would really like to get to the source of this.

She has a bit of a cold right now. Runny nose, cough, temp and of course retching. She woke up in pretty good spirits this morning though so I hope she is through the worst of it. She's napping on the couch right now.

She weighs a WHOPPING 32 lbs even. I can feel every pound of it too. This child has GOT to start walking, she's killing me! She is also getting taller and it's so neat to see her growing so much. She is now wearing a size 4T! Such a big girl. Her feet are still a tiny size 4/5 in baby sizes. We had her kidkart adjusted a month ago and they said they don't think they can adjust it much bigger than what they have done. Hopefully by the time she outgrows the current adjustments she will be walking. Otherwise we will be looking at new chairs for her.

I am in the process of writing a letter to get her a medical bed. She really needs one that is elevated but that also raises her feet up so she doesnt slide down the bed at night. She wiggles so much that I worry even with the toddler rails up. She wiggled all the way down the bed one night and rolled right out. FREAKED ME OUT. Pray that the process to get the bed won't be a nightmare.

Tuesday, January 15, 2008 4:36 PM CST

Makily had a follow up with the cardiologist yesterday. It was to check on the device in her heart they used to close the ASD's.

I told the doctor about Makily having bradycardia's (low heart rate) at night. I also told her that when she was in the hospital for pneumonia that she did it ALOT then too.

If you remember last time we were there (for her three month follow up) they noticed she had mitral valve regurg. They couldnt look to see if it had been there before the repair or not because their computers were down. Well it was NOT there before the heart cath so we think the ASD repair caused the mitral regurg. It's not terribly bad but because of that and all the heart decells at night she wanted to do a 24 hour Holtor on Makily. We stayed in a hotel over night in Orlando and I turned the Holtor back in today and we came home. She called and said the Holtor reading looked good. She wants us to come back in a year to look at the mitral regurg and see if it resolves itself or if it is better/worse/the same.

I was really hoping we wouldnt have to continue following with cardiology but oh well.

Monday, December 31, 2007 2:23 PM CST

I put the video I made for Christmas at the top of the page. Please watch and enjoy.

All is well here. We are gearing up for the New Year. Hopeful that 2008 will bring many new adventures for our family (minus hospitilizations, we can do without those!).

Makily is still a little congested and was retching with feeds the other day. NO blue spells thankfully. We kept her in though and missed a chance to meet another ES family which was sad. Hopefully next time though Meredy. Allen and I were also starting to feel under the weather but today things are good.

I just now finished the video of Makily's last hospital stay (for the pneumonia). It's so amazing for me to see her hooked up to an IV and so sick but still laughing at something as simple as a balloon. I love this child so much.

So glad we are home and she is better.

HAPPY NEW YEAR TO ALL!

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

Tuesday, December 25, 2007 8:12 PM CST

Makily has had an AMAZING Christmas!


Saturday we went to "Jam in your Jammies" with Mr. Richard at the Marion Theatre. Yes we ALL wore our jammies and had a great time. Makily really loves Mr. Richard. Allen and Justin BOTH won the pajama contest. Makily was so proud of her Daddy! :-)

Christmas Eve we spent with Allen's side of the family. WHAT A BLAST we had. Makily watched Ratitoulle (sp?) and then zonked out. She got some AWESOME presents and it's so cool to see all the toys she is able to play with now. It will be one noisy house for a while here.

Today we spent with my side of the family. The house was packed and we all had a great time visiting. Makily charmed everyone as usual and watched some Spongebob and did some MAJOR playing with all her new toys. I have sooo many pictures. I am going to try to get them all uploaded tonight if possible.

The picture you see above is OUTSTANDING ISNT IT? I had taken it at Halloween time in her "bee" costume. Well a friend of mine told me about "Elegantly Painted", and I saw some of Lavone's work. I HAD TO HAVE SOMETHING DONE OF MAKILY. Anyway she did an AMAZING job, I love the painting and it was given as a gift to all our family. I can't say enough about the lady that painted this picture. Makily was even looking up in the original and she was able to move her eyes downward.

I LOVE IT!

HERE IS A LINK TO THEIR SITE:

http://www.elegantly-painted.com/

Monday, December 17, 2007 9:12 AM CST

WE ARE HOME!

So happy to be here. They were good to us at Munroe but I so didn't want to be in the hospital another day!

Makily is doing better. She tolerated all of her feeds for two whole nights and during the day yesterday.

She is still a little wheezy and crackly but has maintained her 02 sat at 95 or above the last 24 hours. We are still doing breathing treatments and steroids.

As soon as we got home I got her into the bath (bed baths in the hospital just don't cut it). She LOVED her bath. Then she got snuggle time with Mommy and a nice massage. Now she is happily watching Dora and talking to the TV.

THANK you all so much for your prayers. I am so thankful to all my caringbridge friends that pray and think of us. We love you all

Still working on a video but here are a few pics of the last few days.

Sunday, December 16, 2007 8:29 PM CST

hi this is Trish updating!

We are still in the hospital. I am using the computer up on the unit my Deborah works on so this will be quick.

Makily has had an EXCELLENT day. She tolerated her full feeds all night last night and all day today. She had one little retching episode but recovered quickly from it. She is much happier and is back to her old self. She is still getting breathing treatments every six hours and antibiotics. Daddy got in last night and bought her a ridiculous balloon (that has become a tradition when she is inpatient). The thing is HUGE and plays "don't worry be happy" when you hit it. It's EMBARRASINGLY LOUD! I hate the thing but she seems to love it and had a ball playing with it today.

We are expecting to be discharged tomorrow morning. I am so ready to be out of here. Will update again tomorrow HOPEFULLY from HOME!

Thanks for all the prayers!

Friday, December 14, 2007 10:06 PM CST

Makily is still in the hospital, still on IV fluids and antibiotics, and she is feeling a little better.

Dr Pierre was in this morning and told Trish the RSV swab and the Flu test they did on Makily both came back negative, so she thinks it is pneumonia, and that they caught it before it started to show up on Chest x-ray. They started up some breathing treatments today, too.

They started tube feeding her again, and running it really slowly at 15cc per hour, and are just running it that way continuously. They started it that way around 10:00 AM, and Trish says she seems to be tolerating it well. I have been trying not to call up there today because the two of them are trying to sleep.

My mom and Dad went up to the hospital when they got off work so Trish could run home and shower and get a few things from home, and they said Makily was looking a little better, watching SpongeBob, and smiling at them.

Hopefully, if she is tolerating the feedings, she is feeling better, the fevers have stopped, and the blood cultures come back negative, Makily can go home later tomorrow.

I'll update again when I hear from Trish, or she will update when she gets home.

Auntie Deb

Thursday, December 13, 2007 8:37 PM CST

**UPDATE FRI. DEC. 14, 2007 @ 7:32AM**

Makily finally fell good and asleep last night, and when she did, her sat's dropped into the 70's and stayed there, so she was put on oxygen. Trish said as soon as the oxygen was put on, her sat's jumped up to 100nd her color was much better. They used a mask, and Makily did not even care, so that ought to tell you how poopy the little munchkin feels. She HATES things on her face. Otherwise, it was an uneventful night, and Makily and Trish got some rest. I will update some more when Trish calls me.

Auntie Deb




Hello, It's Auntie Deb updating for Patricia and Makily tonight.

Makily is in the hospital. She started to spike a fever yesterday out of no-where of 102.3. Trish says she was fine one minute, and burning up the next. She seemed to be able to keep the fever under control with Tylenol, but Makily was up all night long coughing and having lots of mucus and secretions. Even with the robinol on board, Makily is like a slobber faucet. Poor baby girl. Needless to say, Trish and Makily got no sleep last night.

This morning, she called Dr Pierre, and she wanted Trish to bring Makily in at 1:00 PM. Dr Pierre did not like the way Makily's lungs sounded, so she wanted her to go to radiology associates and have a chest x-ray, because she felt like Makily has pneumonia. While Trish was waiting on Dr Pierre to give her the prescription, she started to feed Makily through the g-tube with the pump. She had not eaten much today, because she kept retching every time the feeding got to about an ounce (she often times will retch when she is sick like this). Well, right at 1 ounce, Makily had a really bad retching episode, and had a hard time getting under control. Her lips and face started to turn blue, and Trish had to pick Makily up and stimulate her to get her to breathe again. Freaked her and Dr Pierre right out, so the feed was stopped. Trish went on to radiology associates with Makily with the understanding that if the x-ray showed pneumonia, she would be admitted to the hospital for IV antibiotics and breathing treatments.

Trish had to pull over twice on the way to radiology associates and beat Makily on the back because she had retching episodes so bad that she was turning blue again.

The x-ray actually looked pretty good, they did not see any pneumonia, but because Makily is not able to eat, has the high fevers, and is having blue spells, she went ahead and admitted her. She is on IV fluids because she was dehydrated, and IV antibiotics. They are also giving her tylenol for her fever, and checking blood work for infection.

I went up there to take Trish some clothes and something to eat, and Makily was sleeping when I first got there. She has little popped blood vessels all around her eyes from the constant coughing and retching so hard. Her little face is all red from the fever.

Trish tried to start feeding her right when I was leaving. She said when she got to 27cc that Makily started retching again, and her sat's dropped to 84 She said she wasn't blue this time, so it is scary to think what her sat's were when she had the other three episodes today.

Please keep them in your prayers. For those of you who wanted to know, Trish and Makily are at Munroe Regional Medical Center in room 219.

Allen is on his way back and will probably be in Ocala on Saturday morning. Please pray for a safe trip for my Brother-in-law.

I will update the site as Trish has news.

Auntie Deb

Tuesday, December 4, 2007 2:29 PM CST

Makily is SO much better. In fact it seemed like right after I posted the last entry she started to get better! Thanks for the prayers everyone, they obviously worked!

We have been busy busy around here. We went to the Christmas Parade last weekend. Makily REALLY enjoyed it. She sat up on Daddy's shoulders and just gazed at the floats, cars and bands. Several times she would bust out laughing while patting Daddy on the top of his head...NOW THAT is terribly cute I tell ya!

We also went to Silver Springs Festival of Lights with the Teals. The girls all had a fun time together and got to see Santa Claus.

She is still having some strange retching episodes that I just don't understand. She tries to puke and it just breaks my heart. I don't know what is causing it but we are definitley keeping an eye on it. I will mention it to the gastro at our next visit with them.

Check back later on for new pics!

Saturday, November 24, 2007 8:31 PM CST

Makily is sick.

She has an ear infection and a massive cold.

She is on antibiotics for the ear infection. She has been congested on and off for three weeks now. The last 4 or 5 days have been terrible at night. She does pretty well during the day, but when night time hits, she is a mess. She coughs all night long. We have done every positioning trick we know to keep her elevated. She wiggles out of it and ends up laying flat. All of her secretions just kind of settle in the back of her throat and build up there. Then she wakes up coughing and gagging...this goes on all night. Her apnea monitor has also been going off due to a low heart rate, which she brings right back up within seconds. Allen and I are very tired. Tonight we are going to put her in the bouncy seat, strap her in and place pillows all around her. My hope is that this will be comfortable enough and elevated enough for her to breathe easier. Through it all though she is the happiest kid. Even at three in the morning, she will give you a BIG grin in between her coughing and gagging. She is such a sweet, happy little girl. We are so very blessed.

Our Thanksgiving went very well. She did spike a fever and we caught it before it got out of hand. Before that though she was standing and taking steps (with help), laughing and playing and just taking in all the attention she was getting. I have lots of pictures and video to upload. Keep checking back for that.

Please pray that Makily will get rid of this cold and ear infection VERY SOON, so we can all sleep again!

Sunday, November 18, 2007 10:54 AM CST

All is well here. We are gearing up for Thanksgiving. Everyone is coming here this year and so it will be very exciting.

Last week Makily had a field trip with her class to see Mr. Al. She slept through the first half of the show but really enjoyed the end. She stood up through most of the last half of the show and had a big time. She is happy much of the time now. We also saw Mr. Richard at the Marion Theatre last Friday and BOY does she love that guy. He just walked into the room before the show started and she got so excited...kicking her feet and making her shoes squeak. Mr. Richard even remembered her from the last time we came! She is pretty unforgettable if you ask me! :-)

I had the opportunity to volunteer at the school twice last week. I didnt realize how much I missed working with lots of children until I did it all day. The other children in Makily's class are JUST AMAZING and I am in awe of them. I also volunteered in a regular ed 3rd grade class and that was fun and interesting too.

I have made another new video of Makily...check it out here. This is a cool one of her playing with her angels.

Photo and video editing at www.OneTrueMedia.com

Tuesday, November 6, 2007 5:35 PM CST

Sorry for the lack of updates. Things have been fairly quiet lately!

Makily's class had a field trip a few weeks ago. They went to Palimino Play in Ocala. Her GG was able to go with us and we all had a very nice time together. Makily enjoyed bouncing and swinging. She fell asleep about an hour into being there!

The weather here has changed. It's getting colder every day (well cold for us)! Makily has been "trying" to get a cold for the past week. She will have a cough and congestion for a few hours a day and then it's totally gone. We kept her out of school Fri and Mon but we sent her today. The nurse noticed she was a bit congested and that her heart rate was a little on the high side. Her breathing was also a bit faster than usual. She felt warm to me but she has no fever so I am praying that it's just the weather change and that she is not fighting anything.

She is really growing like a weed. Today she wore a size 4T outfit to school. It was a little big but the fact that it fit her blew my mind. I can tell when I carry her that she is growing taller too. It's hard to believe this is the same kid that lived in size 6-9 month clothes for almost a year!

Friday I plan on taking Makily to see Mr. Richard. He writes and sings childrens songs, plays the guitar etc. He appears at the Marion Theatre often and we went last time. Makily LOOOOVED him. Those with little ones in Ocala or the surrounding area should really take their kids. It's a fun little show. He is having two shows on Friday one at 11am and the other at 4pm.
Here is a link to the Marion Theatre's site with more info:
http://www.themariontheatre.org/events/kidsevents
(I'll try to make that clickable later!)


That's all for now really. Hope you enjoy all the pics that are up of Halloween. I will be doing another photo shoot for "fall" in the next several days. Keep checking back for even more pics of the Princess.

Thursday, October 18, 2007 9:00 AM CDT

We had a BLAST at Disney. Makily was AWESOME and had a great time. We enjoyed our time with Stephanie and family and are so glad we got to spend a few days with them.

I will update more later but for now here is a video of our trip!

Make video montages at www.OneTrueMedia.com

Sunday, October 7, 2007 8:43 PM CDT

Many exciting things coming up for little Makily!

Makily will be getting her school pictures taken on Wednesday, how weird is it that she is big enough for that! After school on Wednesday we are leaving for Orlando and will be staying for an ENTIRE week. We plan on meeting up with the St.Pierre family and hitting all the Disney parks! Whoo Hooo, we just can't wait.

Oct 23rd she is having her FIRST field trip! They are going to a new kids play place here in Ocala. I havent been to this one yet so I will let ya know how that goes. She loves school and her sleeping patterns are a little off right now. I am hoping that once she totally adjusts to being there full time this will get better. She is doing a few new things, one of which is pulling herself up in the stroller. Usually she just lays back but the last couple of weeks she is pulling herself to sit up and look around. It's soo cool to see her do that.

She has TWO halloween costumes this year. I couldnt decide so we got her both. We will be doing a photo shoot soon so look for pics in the next several days.

We ended up trading in the van that gave us so much trouble and got a new/used one. Financially it was quite a stretch but you do what you have to do. It's so much more reliable and Makily just loves it.

Thanks so much to all who have prayed for my sweet neice Delaney. We went to the pedi ortho and they took x-rays. Delaney was SUCH a good girl through it all.



The doctor says that right now he does NOT consider Delaney to have Blount's Disease. He says that at her age it's normal for her to look "bow-legged" and that most babies grow out of this by the time they are two. She walks with her legs pretty far apart, so that along with some baby fat makes her legs look more "bowed" than they truly are. She was also breech for quite a long time during my sister's pregnancy and her legs were right up by her head. He does want to see her back when she is two to make sure that it has resolved by then (there was some mild bowing of the tibia's). If not he said she may need braces. We are hoping she will just outgrow this. Will keep you posted.

I have a few prayer requests tonight.

First off I would like everyone that will to visit this site and light a candle for sweet Payten.



Your candle only burns for 48 hours so if need be please relight it so it is burning on Tuesday October 9, 2007. This will be the one year anniversary of her earning her angel wings. Please say a prayer for her family that they will be able to get through this difficult time of year.

Payten's Candle

Bonnita, You know your family is always in my thoughts and prayers. Payten will never be forgotten.


My next prayer request is for the family of Trinity Bright. I do not know them, I have never spoken with them either. I was directed to their site by another friend of mine. Trinity was only seven years old and was diagnosed with a Pontine Glioma....inoperable brain cancer. She passed away in her sleep on Saturday 10-6 after a seven month fight. I cannott imagine the pain her parents are feeling at this time but please stop by their site and offer them prayers and your condolences.

Trinity's Page

Here is a link to a story that was done on Trinity just this past week. She passed away just two days after this was filmed.

Trinity's Video

To Trinity's parents and family. I cannot imagine the pain of loosing your sweet girl. I know that God is with her now and she is no longer suffering. She is healed and whole again. Take comfort in knowing that your child was an angel walking on this earth. She was special from the moment God created her and he knew from the beginning she was going to do GREAT THINGS and reach so many people. She has touched me all the way here in Florida. God Bless you all.
Sleep peacefully Trinity.

I know I have said this SO MANY times before but PLEASE hold your children close to you, THANK THE LORD ABOVE that he gave them to you. APPRECIATE their health and when they are driving you crazy and making you loose your patience be glad that you still have them here to do that. These family's aren't as fortunate. Please pray for them.

Sunday, September 30, 2007 9:13 PM CDT

All is well here!

Makily started pre-k FULL TIME last week and she handled it PERFECTLY. She is still a bit sleepy after school but she perks up quickly. I got a folder full of arts and crafts they have been doing in class and it makes me tear up. I know they are helping her but seeing pages that she has colored or painted just gets me (she usually screams when I try to get her to hold anything for any amount of time). She is also pulling herself to sit up in the stroller rather than just laying there while we stroll. She can maintain it for several seconds and then leans back. The drive for her to do it is there though and that is SOOO IMPORTANT! Her first field trip will be the end of next month and I am of course attending. They are going to a place called "Kids Gym". I have yet to go there but I imagine we will have lots of fun!

I have a few special prayers requests tonight.

First off my niece Delaney is having a problem. She is 17 months old and we just love this kid. We had noticed her legs were a little bowed out but I have seen many babies with his and they usually just grow out of it. We didnt think much of it. Deborah (my sister) took her for a well check and mentioned it to Dr. Pierre. Dr. Pierre watched her walk around and decided to refer her to a pediatric orthopedist to get their opinion.

Deborah took Delaney in and the doctor believes she has Blount's disease. That means that her tibia's (shin bones) are growing out in an arc rather than straight down. He is referring her out to yet another pediatric orthopedist to have her evaluated. We are praying that something as simple as bracing is all that will need to be done for Delaney. Even still putting braces on a 17 month old will be a challenge as Delaney is VERY mobile and will not understand why she has to have these things on her legs. The doctor said it is good that it has been caught so early so hopefully she will never need any kind of surgical intervention. PLEASE pray that this is the case.

Monday, September 24, 2007 11:29 PM CDT

Sorry for lack of updates lately!

Today we had a follow up with Makily's cardiologist.

She had an EKG and an ECHO. They both came back good. She has NO RISIDUAL LEAKAGE from the ASD's! This is GREAT!

She does have mitral and tricuspud valve regurge. It it mild. We will not know if it has changed since her last echo or not for a few days. The computers went down and they were unable to look at the last echo report or pictures. She also has a TEEEEEENY TIIIINY PDA (patent ductus arteriosus). It's super small so they are not concerned with it at all. She told me that we would just monitor the valve regurge. We see her in six months and at that point we should be able to take Makily off the baby aspirin.

We also have decided that Makily is ready for school FULL TIME now. She will be going five days a week from 7-2. It is going to take a little schedule juggling but she really enjoys it and we feel it's what is best for her.

We are getting closer and more excited about our Disney trip next month. Makily is just going to have such a ball and I can't wait to see her little fact light up. There is no other feeling in the world like seeing her enjoying something....REALLLLY enjoying something.

Here is a quick video of our appt today with the cardiologist. (click on the link below Allen's picture)

Heart Cath Follow Up.

Enjoy all the new pics and PLEASE sign the guest book if you have a moment!

Thursday, September 6, 2007 1:17 PM

Makily LOVES school.

I just can't say that enough. Her teacher, the nurses, assistants and aides have all just fallen in love with her. They can't wait for her to come full time!

She is VERY tired when I pick her up though and is sleeping alot again. I suppose it's due to starting school and the fact that her seizure meds were increased. The old dose was written for her weight over a year ago. She has gained 10 lbs since then so that is why they increased it.

Those who have asked NO, Makily's ears are NOT pierced. I had found some cute "sticker earrings" and put them on her that day. As much as I would love her to have pierced ears I can't bring myself to do it. :-( She just has been poked, prodded and cut open so many times that I think it's unfair to poke holes in her ears just so I can say how pretty they look! Call me crazy but I am a wimp when it comes to this kid!

We are planning a Disney trip next month. SO EXCITED. My friend Stephanie and her family are coming from Canada and so we are going to go with them. There is another ES family that is coming so it will be nice to catch up with all of them. Makily LOOOOVED Disney last year so I can imagine she is going to have a BALL this time too.

She has some appointments coming up soon including cardiology, gastro and some testing so I will be updating on all that as time goes on.

Sorry for the lack of videos lately. Things have been so crazy around here getting her ready for school and adjusting to not having her with me 24/7 and so it's been strange. I'll get back on the ball soon!

Friday, August 31, 2007 5:35 PM CDT

Sorry I am just now updating. It's been a whirlwind of a week for us!

Makily started Pre-K on Wednesday. SHE LOVED IT! We had ZERO problems as far as transitioning her into school...in fact there was no transition...she just went and was happy as can be! Not one tear or tantrum. She was all smiles and giggles.

Her class has only THREE children in it INCLUDING Makily. I LOVE this because it's almost one on one. There is her teacher (whom I LOVE by the way), her assistant and then a flex aide that comes in twice a day an hour at a time to sit with Makily during her feeds. She reads books to Makily and plays with her. Of course the Princess loves it! Her teacher told me that she rocked Makily for an hour during nap time. SHE SO HAS THEM WRAPPED AROUND HER LITTLE FINGER ALREADY! What a stinker!

She did great for the PT and speech therapist. I know she had OT today but didnt get a report on that so I need to look into how that went.

They all love her so much that when I went to pick her up today they wanted to know when we were going to bring her full time. Right now she goes M-W-F from 7:15-2:05. We can move to five days a week whenever Allen and I feel like it. Honestly she is READY now but I don't know if I am or not. I think we may give it a few more weeks. The teacher just goes on and on about what a good girl she is and how she is just happy and giggly. They havent seen a Makily tantrum yet...give it time. ;-)

She did have a BLOW OUT today. Poopy I mean. It went everywhere and got on her outfit so they had to put her in clothes that they had there. I am going to bring in a few extras for them just in case (should have already but I have been running crazy getting all her meds straight for the school) this happens again, and knowing Makily it will!

I took her to see "The Wizard Of Oz" yesterday at the Marion Theatre. SHE LOVED IT! She squealed, giggled and grinned through the whole time. She is such a joy and I spent more time watching her than I did the movie.

Today we went and saw "Mr. Richard" at the Marion Theatre (they have alot of cool stuff going on there right now!). He is a guy that plays the guitar and sings kids songs that he wrote. Makily had a ball and we got down in the front and I danced around with her. She really thought that was FUN! She even grabbed Mr. Richard's hand at the end when he gave her a sticker. Slobbery hand and all but he was nice about it! LOL

So needless to say it's been a busy and exciting week for us. I really think Pre-K is going to be AWESOME for her but I am sad that she is growing up on me. All day long today I had the WORST feeling like I had forgotten something and I know it was because I didnt have her with me. That is SO HARD. :-( I miss her.

Enjoy all the new pictures.

Monday, August 27, 2007 7:32 AM CDT

Well Makily isnt starting school today.

We had her IEP on Friday. It went surprisingly well. I was very happy with the meeting and Makily is getting lots of services. So happy with all that. I have a TON of paper work to get filled out and things from Dr. Pierre that have to be filled out in order to get her into school. I had no idea that most of this had to be done until Friday afternoon. Other than that the meeting went great.

In true Makily fashion we had a g tube issues as soon as we walked in. I swear this tube is going to be the death of ME! I went to stand up and somehow the extension pulled out of the pump tubing (not out of Makily....I would have had a nervous breakdown right there). Formula and bile start leaking everywhere....there were two kids standing there watching with their eyes as big as saucers. I had to giggle. We went into the room and everyone OOOOO'D and AHHHH'D at Makily. She was a little ham through the whole meeting. Makily's teacher (whom I was IMMEDIATELY at ease with) sat next to us and Makily made goo goo faces while grinning at her and of course her teacher was in LOVE. They all laughed at what a cutie she is. I think she knew to turn on the charm because she was hamming it up for them BIG TIME. She had her squeaky shoes on and kept kicking her feet and squeaking through the meeting. SUCH A CRAZY KID.

Her teacher has a son with Downs Syndrome and when I found this out a HUGE WEIGHT lifted from my shoulders. She really impressed me so sending Makily to school knowing that this is her teacher is a huge help to me. Also seeing that Makily was infatuated with her helped too!

She will be getting PT, OT, speech, language and feeding therapies! THIS IS SO HUGE and exactly what I wanted for her to have! I would have preferred she have more than 30 minute sessions but they feel like 60 minutes will be too much for her to start. We will re-evaluate that at her next IEP.

I did have to fight a little in order to get someone to sit with Makily during her pump feeds. My fear is that another child will be curious and may pull her tube while it's in her or run off with her pump. As you know this would be a NIGHTMARE for Makily. It was when I finally explained what the procedure for Makily would be to fix a pulled out button that they agreed to have an aide sit with her during feeds.

I had set it up for her to start on Tues so that way Allen could go with us but then I realized that I work on Tues and wouldn't be able to go with her. DUH!??! So she is going to start Wednesday morning. The hours are 7:15-2:05. She will be going Mon-Wed-Fri. Eventually she will be going five days a week but I wanted her to have some time to transition before we made THAT big of a change.

I will post pictures and an update on how things go on Wednesday!

Tuesday, August 21, 2007 9:53 PM CDT

Makily had her three year well check last week.

She is EXACTLY 30 pounds! SO BIG! She is 32.5 inches long and is wearing a size 2t/3t. I am so amazed at how much she is growing. I look at her and I am starting to see a little girl rather than my little baby......THIS SCARES THE HECK OUT OF ME BY THE WAY!

She has fluid in both her ears and one of the tubes are out. She had some discharge coming out of one of the tiny ear pits by her ears last week so we are keeping a close eye on her (sometimes this is a pre-curser for an ear infection).

She stood up for Dr. Pierre and then made the cutest I'M PROUD OF MYSELF FACE. It was funny. They checked her iron level and it was fine, she didn't even cry when they pricked her finger...that's NOTHING to this tough kid! I had a little scare with her last week. She had blood in her stools, I took the diaper into Dr. Pierre's office and she confirmed it was blood. She sent it for a culture which came back fine. Most likely it was just from lower bowel irritation because we have such a rough time getting her "regular". It hasnt happened again so I am hoping that is the last time we will see that.

Make video montages at www.OneTrueMedia.com

Friday August 17, 2007 6:50

*****
Please check out my PERSONAL blog. Allen and I were scammed by a car dealer and we want to get the word out to EVERYONE about this place:

My blog is at:
http://mynewnormal.blogspot.com/2007/08/our-luck-just-never-runs-out.html

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

MONDAY AUGUST 13TH 2007

Makily is doing just AWESOME!

First off for those who have asked her tummy is doing much better. IT IS leaking a little but not like it was before Dr. Pierre did "the procedure" on it. It's VERY CONTROLLED and minimal. I am sure it will take a few weeks and will stop altogether. I want to thank ALL THE P2P mommies that sent Makily tummy gauze. We have had to fight with Apria to get extra and even then they never sent what was supposed to be sent when it was supposed to be sent. We have more belly gauze now THANKS TO OTHER SPECIAL NEEDS PARENTS!! Thank you so much ladies, Barbarann, Cheryl and Maryanna we have gauze busting out of every closet in this house! THANK YOU!

I also have some really cute new videos of Makily.

The first one is of her playing with her DAddy and discovering that she loves baby dolls!

Photo and video editing at www.OneTrueMedia.com

Wednesday, August 1, 2007 7:24 PM CDT

Today was a tough day for Makily.

A week ago Saturday (11 days ago) we took Makily to Wild Waters. SHE LOVED IT. We rented a cabana (tent area) and when she needed to eat or seemed to be getting hot we would get under it and relax. It was a WONDERFUL day but didnt end so wonderfully.

Well we got home that night, she ate. I unhooked her from the pump but I left the extension tube attached to her button. This was my first mistake. Her and I were sitting on the love seat together. I got up and somehow her extension tube got tangled up in my shirt or shorts and when I stood up I KNEW WHAT HAPPENED AND I DIDNT WANT TO LOOK. I looked down at the floor and Makily's extension tube and button were on the floor BALLOON INFLATED AND ALL. When I stood up it ripped right out. I just stood there saying "OH MY GOSH"!!! It took Allen a few seconds to figure out what had happened. Makily was screaming by that time. Allen has never put a button in so I had to put it back in...shaking and crying. Makily was VERY UPSET as was I.

I should have been more careful, I am so mad at myself.

As most of you know we have had MAJOR leaking issues with Makily in the past. It's an off and on problem that for the most part we have learned to live with but more importantly control. I knew when it ripped out most likely we would have some leaking issues because it came out WITH the balloon inflated. It started leaking that night and has continued. I was doing everything I knew to get it to heal and stop leaking. Yesterday morning I realized, I had done all I know how to do, it was only getting worse. It was so bad that she was soaking through her belly gauze and was leaking formula onto her bed at night. I wasnt sure how much of her meds were staying in her tummy and how much were leaking out. I noticed yesterday that some of her Topomax was lodged in her stoma HOURS after I had given it. NOT GOOD as that is her seizure medication.

We went to Dr. Pierre today. I explained what happened and how bad it was leaking, she thought maybe we could give it more time to heal. Then she took the gauze off. She agreed we had to do something. So she took the button out. The track was bleeding and the site is VERY irritated. It was bleeding because of all the acids leaking out and from the trauma of the button coming out balloon and all. The leaking was making the bleeding worse. She had to cauterize the stoma and track with silver nitrate. This was very painful for Makily and she cried very hard. So did I. Once she finished that she said we would leave the button out for an hour and a half, this would give it some time to heal and then we would put the button back in. She checked in on Makily a half an hour later and said it was closing fast and so she put it back in then. This was also very painful for Makily and she cried VERY HARD again.

I gave her some Tylenol right after and hooked her up to eat because Dr. Pierre wanted to make sure we had stopped the leaking. I sat her down on the table, hooked her up to eat and put all her toys around her. She immediately started kicking, giggling, "talking", and playing. I got teary-eyed again. How is it that she just had her stomach CAUTERIZED and tortured and she is smiling and playing minutes later? While I am happy she recovered so quickly, it makes me sad because I know it is because she has become accustomed to pain. No three year old should ever be used to that kind of pain. This makes me sad for her.

She is the strongest most amazing soul I have ever known.

One of my favorite quotes of all time is "Pain is just weakness leaving the body".

Makily must be the strongest kid on the earth. Bless her heart.

Her button has not leaked since we cauterized it. Please pray that it can heal correctly now and that the leaking does not start up again.

I took these pictures at Dr. Pierre's office after it was all over. I am still stunned that she was so playful and happy.

Tuesday, July 17, 2007 11:39 PM CDT

Sorry I am just now updating. Things have been a bit crazy since we came home.

We stayed in Orlando one extra night. Things went AMAZINGLY well for Makily this time. I almost want to pinch myself it went so well. The heart surgeon, the nurses, doctors EVERYONE was so wonderful to us. Makily was treated like royalty and I still can't get over how awesome everything turned out. I am so glad it's over and she is okay. Even though it all went well I NEVER want to go through that with her again. We were all a bundle of nerves.

Miss Makily is doing so great, she is happy and giggly, you would never know she had anything done. We are keeping her out of therapy this week to be on the safe side. Next week though she is going to WORK! We already have her back on her schedule, she is sleeping in her room through the night still! I am so proud. I start off in her bed with her and then end up in my bed by the end of the night (she wiggles alot!).

Thank you, thank you, thank you for all the candles lit, the prayers said and the thoughts sent our way. I know that Heaven was swamped with prayers for Makily and that is why things went so well.

I will leave you with a montage of Makily's hospitilization. Enjoy.

Make photo slide shows at www.OneTrueMedia.com

Friday, July 13, 2007 9:51 PM CDT

Hello!! This is Auntie Deb updating for Trish, Allen, and Makily. I am so sorry it took so long, I am sure everyone was anxiously awaiting news but there was no internet access at the hotel, or the hospital, so I was the first home to a computer.

Makily did GREAT!!

Everything happens for a reason. Wait until you hear what happened.

We checked in at 6:00 AM, and they took Makily, Trish, and Allen back at about 7 or 7:30. The docs sedated Makily, and put in an IV, then sent Trish and Allen to the waiting room with the rest of us. They intubated her with the fiberoptic scope, and it only took one try, but they did it in the left nostril instead of orally, because they were going to do the TEE (transesophageal echocardiogram). For those of you who are not sure what that is, they stick an ultrasound probe in the mouth, down the throat, into the esophagus, and do an ultrasound of the heart. The pictures you get from the TEE are WAY better than doing the ultrasound from the chest.

So--they took her back after intubating her, and did the MRI of her brain that was scheduled first then took her back to cath lab. Dr. Nykenan came in to let us know what he planned on doing, and get consents, and answer questions. He said he was going to do the TEE, and then the cath procedure. The whole deal would take 1 1/2 hours, and if any longer, he would let us know, and send someone out to update us. He had three possible devices he could place in the hole in her heart. He said he would not know which to use until he got in there and saw the holes.

Well, because Makily's mouth is so small due to her PRS, they were unable to fit the ultrasound probe, so they decided just to do the cath.

When they got in there, they discovered that the bigger hole was really not 1 hole--but 5. so she had a total of 6 ASD's, and there was A LOT of shunting. He compared the area to a piece of swiss cheese. Under normal circumcstances, he would have just abandoned the cath procedure, sent her to recovery, and ordered a consult for open heart surgery with the cardiac surgeon, but he said he felt like since he was in there, and since she always had so many airway issues he did not want to put her through surgery. He said he wanted to see if he could cover the holes.

He tried two devices, and said he was successful with the second one. There is some residual leakage around the plug, but he said that it is very insignificant, and at 6 months should be mostly gone, and possibly totally gone at one year post procedure. She will be on 1/2 a baby aspirin every day for 6 months, and then they can stop that. They wanted to keep her in ICU overnight just because of the plug being placed, and the fact that she was sedated for so long and on the vent. As long as all is well, she can go home tomorrow. The nurse let Trish stay the night in ICU with Makily.

She came out of sedation great, off the vent easily, and is NOT on oxygen!! Her sat's were 98% when I was in there, and she was grinning at me, holding my hand, and gooing and talking, watching cartoons. They started her feeds back up as my hubby, parents, Liz, and I were leaving.

Makily came SO close to having surgery. If he had been able to do the TEE and see the holes, he never would have done the cath. He would have just consulted surgery. He felt so compelled to try and do the plug anyway after seeing that there were so many holes during the heart cath, and I have a feeling God was talking to Dr Nykenan today.

Thank you, Thank you, Thank you to everyone who has been praying for Makily and our family. I know that all the prayers and well wishes had something to do with her good fortune today. God was definitley holding the doctor's hands, and Makily's heart today.

I will update again whenever I hear from Trish!!

Wednesday, July 11, 2007 4:18 PM CDT

This will most likely be my last update until after Makily's heart surgery on Friday. If my sister brings her laptop I will try and update sooner.

We are scheduled to arrive at APH at 6 AM on Friday morning. Makily will be prepped for her MRI of the brain which is scheduled for 7:30am. Once the MRI is over she is supposed to be taken up for the TEE and heart cath at 9:00am. I know her MRI took about an hour the last time but I have no idea how long the cath is going to take.

As most of you know Makily is on continuous feeds throughout the night. She is not allowed to have ANYTHING after midnight. Well I take that back she can have ONE ounce of PEDIALYTE before 2AM. She REALLY screams now when she is hungry, so I am a little worried about how she is going to handle this. We plan on starting a continuous feed at 6pm tomorrow night and will feed her til midnight. I hope this will help!

We are leaving tomorrow morning for Orlando and going to try and have a relaxing day by the pool with Makily. I have a bit of a cold so I haven't been able to love on her like I want to. If she catches what I have they will cancel the cath. She JUST BARELY got rid of an ear infection so we are scraping by as it is! I WANT THIS OVER WITH SO BAD!

Neither Allen or I are handling the stress of this well. This is different for us because usually I am a mess and he is fine but I think the fact that this is her heart we are dealing with is scaring him too. Please pray for peace for Allen, myself and our family. We are all worried and sitting on nails WAITING to get it over with.

The link to light candles for Makily's heart is right above the journal entry. Remember your candle burns out in 48 hours so relight it if need be!
PLEASE light as many candles as possible and let's have them BURNING BRIGHT on Friday morning in prayers for her. Thank you to all who already have been lighting and re-lighting them. I love reading each one!

I will leave you with ANOTHER montage I did of Makily. I heard this song the other day and HAD to use it for her.

Enjoy!

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

Thursday, July 5, 2007 2:59 PM

Hope everyone had a fun and safe fourth! We had lunch over at the Teals and then we all went to Silver Springs. IT WAS HOT AND SOOO HUMID! There were also MANY very rude people there, one of which BLATANTLY butted Makily and I in line and the other went on and on about how horrible the shows were.

Justin Guarini (from AI) was there and we heard him sing a few songs. We stayed for the fireworks and Makily had a love/hate reaction to them this year. She would get excited and kick her feet while smiling and laughing, then start crying...then close her eyes and act like she was asleep. She continued this cycle through the entire fireworks show(10-15 mins worth) . Once it was over she cried the whole walk back to the car. I think the heat and humidity added to all the stimulation was just too much for her. Once we got into the car with the a/c going she started to calm down. When I got her home she was asleep before I could get her to bed. She slept through all her night night meds AND her diaper change for the night. Usually we have her in bed at least 1-2 hours earlier so she obviously has really gotten into her routine. I hope being in the hospital next week doesnt ruin that!



Thanks to all those who have been praying for little Jackson. To find out more about him read the last journal entry. He will be coming home.......TODAY! He has been in the NICU for a total of 100 days. His family is very excited and nervous at the same time. Please continue to pray for them that they will all adjust to his homecoming and getting into a routine. They will be having many doctors and therapy appointments and I know this transition is tough at first.

Jackson's mom will be starting a CB page for him soon. I will post it here once she gets it up and going so you can keep up with him too!



Enjoy a few pics from this morning and the last couple of days!


Waiting for the fireworks...pants off to cool her off! This made her a little happier!


Lost in Feathers!

Sunday, July 1, 2007 8:40 PM CDT

Things are going great here. Makily is happy as she can be. We have been getting more giggles and smiles than ever. There was a long time that almost NOTHING made her smile but the last six months to a year she has just been a smiling fool! It's so much fun to play with her, she is really becoming very social. She is such a joy and blessing to us. I am just in awe of this kid!

Let's see, Makily's G tube is leaking. This is a normal thing for us and so I have been doing all I can to keep it from leaking and to keep her stoma healthy. We had a VERY tough time with it yesterday morning. It's driving her crazy though so I am hoping it gets better very soon. It has been a little better today.

I have started to notice this week how big Makily is getting. She is really starting to fill out everywhere. Where did my tiny baby go!? She is wearing size 24 month clothes and SOME 2T'S! She is in a size four shoe (she has the cutest "Flintstone feet" ever)......granted this is still small since she is three but for Makily who has ALWAYS BEEN teeny tiny, this is big stuff! I am so happy to see her growing. I don't realize how big she is until I try to put clothes on her that she was wearing a month ago and they are too little already! Her last weight at Dr. Pierre's office was a whopping 27 lbs. WOWOWOWOWOWOW!

We got a van and picked it up yesterday. I REALLY love it and it's so much better for our family. We have SO MUCH room and we got a GREAT deal on it. We cannott afford a car payment so we only ended up spending a little more than what we got when we sold the truck. This is a very good thing!

She is really doing so many new things. Reaching, grabbing, playing with SO MANY toys. She used to only have one or two that she could play with and now she has FIVE that she really likes and we are working on the sixth. It's a little harder because the buttons are tougher to activate but she will get there.

Please continue to light "Candles for Makily's Heart". The link is above the journal entry. Keep in mind that your candle burns out every two days so remember to relight it! We are getting closer to her heart cath and I am just ready to have it OVER WITH! I really am hoping that we will have TONS of candles burning for her on the morning of her surgery. We will take every prayer we can get!

I also have another VERY SPECIAL prayer request. I would like for all of you to pray for sweet little Jackson. He is three months old and is very special....he has Emanuel Syndrome like Makily. This little boy has already been through so much. Born at 31 weeks, he already had a tough road ahead of him, then the diagnosis of Emanuel Syndrome came. Little Jackson has yet to leave the NICU and meet his older sister. He has had a few surgeries already and many complications. His parents have been right by his side from day one and I know all too well how difficult that first year is. It was not known that Jackson had Emanuel Syndrome until he was a few weeks old, so much like our family did, they are all going through some grieving for the life they had planned for Jackson. It is so hard emotionally in the beginning and my heart goes out to them all. I have spoken with Jackson's mommy Jennifer on the phone and they are dedicated to doing all they can to make Jackson's life as happy and comfortable as possible. Please pray that little Jackson will be able to come home VERY SOON.

Monday, June 25, 2007 12:39 AM CDT

All is well here. Thought I would add another video that I did from clips of Makily last week.

Make an on-line slideshow at www.OneTrueMedia.com

Friday, June 22, 2007 2:52 PM CDT

Things are going well here. Makily is doing awesome and is her happy joyful self as always.

We had a great speech session the other day. Here is a little video I made from that session and about Makily's feeding issues:

Make an on-line slideshow at www.OneTrueMedia.com

Tuesday, June 19, 2007 7:26 PM CDT

Makily is schedule for the following on Friday July 13, 2007:

*Sedated MRI of the brain

*Transesophageal Echocardiogram (TEE)

*Possible Heart Catheterization with atrial septal defect (ASD) repair/s.

She was due for a follow up MRI of her brain (because of the seizure and hydrocephalus) and we had already scheduled it for the end of July.
Since they are wanting to repair the holes in Makily's heart now we prefer that they go ahead and do the sedated MRI at the same time. Makily has a hard time with sedation and intubation and so having the MRI on the same day will kill two birds with one stone.

When I talked to the anesthesiologist about doing the MRI the same day as the heart procedures he said it would be very hard to schedule. They would have to have radiology, cardiology, the heart surgeon and anesthesiology all agree on the day and time. I explained Makily's history with intubation, sedation and the fact that she has such a tiny airway. Once he got a clear cut picture of Makily's issues he agreed that he wanted to do it all in one shot. The problem is that the team that does sedation for heart surgery is different than the ones that do the kids for general surgery (the ones that have intubated Makily before). So it's my understanding that BOTH teams will be there for Makily's procedures.

I am glad we have a date but I am a nervous wreck.

I'll keep you posted.

**P.S. yes I realize this is going to fall on Friday the 13th, I am not terribly happy about that but there really isnt much we can do about it. I am not really superstitious anyway.

Monday, June 11, 2007 6:53 pm

Well we are back from the cardiologist.

Makily was a good girl. She didnt appreciate the blood pressure cuff on her arm (and it didnt work anyway, they had to move it to her leg). She has tiny bruises on her arm from the cuff squeezing so hard! :-(

Anyway they did an EKG and an ECHO. The ASD's (holes) are still there and are measuring 9 mm and 4 mm. Her heart is still pretty enlarged also. The doctor was really impressed with how big Makily has gotten. She told me she looked like a different kid! Since she is doing so well health wise AND weight wise they want to go ahead and repair the ASD's.

*sigh*

She said they *believe* they can patch the holes using a method similar to a heart catheterization. They cannott be certain though and the only way to know for sure is to do a TEE (transesophageal echocardiogram). They will stick a "camera" down her esophagus and look at her heart that way.

If they see that they can repair the larger hole using the "cath" method they will do it right then and there. They will try to patch the smaller hole also. If they cannott get the smaller hole patched they will just leave it alone. Since it is so small it shouldnt cause Makily any problems...it's the large hole they are most worried about...but they will try to patch them both if they can. The holes are close together but far enough apart that they will need to use TWO different "meshes" to close them.

If they do the TEE and see that they are unable to patch the large hole with the cath method then we will have to patch the holes surgically. I REALLLLLY don't want to do it that way and I am praying and BELIEVING that we won't.

Makily will have to be sedated and intubated for this procedure so I am a nervous wreck. I mean it's not enough we are messing with her heart, we get to mess with her airway at the SAME time...lovely. There obviously is no other way though so we will get through it. Makily is a trooper. The doctor said Makily will need to stay in the hospital at least over night to be observed. They also don't want to take any chances since she always has issues coming off the ventilator and being intubated/extubated.

This will be done in the Cath Lab at APH Childrens and they will be calling me to schedule the procedure. Allen and I have both agreed we want to get it over with. We have had this hanging over our heads for three years now and we want to get it taken care of and MOVE ON. Makily has been doing AMAZING for such a long time now that I just want her to be able to continue on the same path and not know that we will have to do this later on down the line. She will be starting developmental Pre-K in August and I really want her to be at her best and have a fresh start.

I will update again with the date for all of this.


Monday, June 11, 2007 7:50 AM EASTERN

Please say a special prayer for Makily today. She is going to see the cardiologist and they will be doing an EKG and an echo to look at her heart.

I will update later on when I get home.

Monday, June 4, 2007 5:10 PM CDT

Makily is doing WONDERFUL!

Allen and I decided we would put her in her own room. It has taken us a long time to get to this point. We had tried to do it last year this time and actually were transitioning well. Then Makily had "the seizure" and I vowed to sleep next to her until she was 30, I have since rethought that LOL!

She did so well at the sleep study in a twin bed so thanks to her Granny Julie she ended up with a REALLY SUPER NICE memory foam/pillow type bed. All I know is it's super COMFY!

We have her on the apnea monitor AND we also have a video/sound baby monitor so we can see and hear her.
Last night was the first night we put her in there and she slept like a log! She has been waking up alot the last two weeks so I was shocked to see that she slept all night. I suppose she needed a bigger bed to stretch out in!

For those of you that didnt know we are going to start foster parenting soon. Our last licensing class is this Saturday and then the homestudy process begins. We are very excited about fostering and can't wait for Makily to have a little brother or sister to play with!

Since we will be fostering soon we really want to buy a van. Currently I am driving a two door Ford Explorer. It's really nice BUT it's tough getting Makily in and out of the carseat in a door two vehicle...plus we barely have any room left now with both her stroller and kidkart. Once we start fostering we really will need something bigger.

So we are selling our Explorer. It is in GREAT shape, looks and runs excellent. It has all the bells and whistles, fully loaded! If anyone is interested in buying it OR if you have a van that you would be willing to TRADE that would be great. We don't need anything new....or even close to new, an older model with lower miles (say 80-110K) I have it in the paper and we havent gotten much response. I am not sure why because I have listed for UNDER blue book value. We are asking $3800 or best offer. If you know of anyone who would be interested PLEASE let me know patyrish237@aol.com. I can email pictures.

I will leave you with a few pics of Makily from the last week or so. Some are of her in her NEW big girl bed! She is so cute!

I am SOOO BIG!


Having fun with Tara!


My BIG GIRL BED!


Me sleeping in my big girl bed!


Sign the guestbook if you have a minute!

Wednesday, May 30, 2007 7:51 PM CDT

**Note: if you have not read the poem "Welcome to Holland" you probably should before reading this entry. Here is the link to "Welcome to Holland". It was sent to me right after I had Makily and it spoke eons about how I felt and described it to the letter.
WELCOME TO HOLLAND

This is the follow up to "Welcome to Holland" and again it describes how my feelings have changed over the past three years.


I'm Home in Holland

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I’d planned.


I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger – the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.


I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.


Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn’t so bad.


I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I’ve wondered what life would have been like if I’d landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?


Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest.


And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things with a new appreciation for the remarkable beauty of Holland with its’ tulips, windmills and Rembrandt’s.


I have come to love Holland and call it Home.


I have become a world traveler and discovered that it doesn’t matter where you land. What’s more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.


Yes, over a decade ago I landed in a place I hadn’t planned. Yet I am thankful, for this destination has been richer than I could have imagined!

Wednesday, May 23, 2007 10:39 PM

Well we are back from Orlando and we survived the sleep study.

Makily did really well. I am so proud of her. We got there at about 8pm but they didnt actually hook her up until almost 11.

**waiting for them to hook her up**


**oh joy, oh fun!**


Makily fell asleep right before he came in to attach all the wires and stuff.


Needless to say she was NOT a happy camper when we woke her to attach all 837 wires and belts to her! She screamed through this process which took probably 45 minutes, when he started attaching the ones to her little face and head I thought she was going to explode, she was MAD! She does not like to be woken up (gets that from her mommy!) Once the guy left the room she settled right down and fell back asleep.




She slept all night long, didnt wake up ONE TIME! I was very impressed! When the man came in at 6am to unhook everything Makily woke up happy at first....and then when he started taking the stuff off her face and head, well let's just say she gave him WHAT FOR! They use this "goo" material for the leads on her head and so it was all in her hair.
This is what we got to battle when we got back to the hotel!


She did NOT enjoy getting all that out of her hair but after it was over she was fine. She is such a strong kid!

We had a great weekend despite all that. We took her swimming in the pool (after SLATHERING her in spf 800 of course!). We went to WONDERWORKS also. It is a really cool place and we had lots of fun there!

Prepare for take off!




I spoke with the pulmonolgist today about her results. They went over it in detail and explained that while YES Makily still does have sleep apnea, she only desats down to 84 percent and stays there for a very short period. 99 percent of her sleeping time she maintains 90 percent oxygen saturation levels. When she does have an episode she handles it and brings her levels right back up. Her sleep efficiency rating went from 70 percent (below normal) to 92 percent (normal to above normal). I am VERY happy with that and I can see the difference as Makily's naps are getting shorter and less frequent.
They said they would like to repeat the sleep study once a year just to monitor her. I doubt we will do another one though unless she is having sleep issues again.

That's all for now! Enjoy all the pics!

Friday, May 18, 2007 8:45 PM EASTERN

We got Makily's new "joey" pump today. I really like it. Still have some kinks to work out but for the most part IT IS MUCH SMALLER and easier to deal with than the old one. The backpack for it is HUGE though. If Makily was walking independently I am not sure what we would do! It is almost as tall as she is!
The guy that brought it was TERRIBLY nice and let us keep our old one through the weekend. He said he would hate for us to have a problem with the "Joey" pump and then have no pump to use at all!

We are leaving in the morning to go to Orlando. We got a free ticket in the mail to go to Universal Studios today! It also came with a 50�ff coupon towards the cost of another ticket! CRAZY the timing. We hadnt really planned on what we were going to do while in Orlando (other than the sleep study) so it's cool how that fell into our laps!

The sleep study is Sunday night into Monday morning. Hopefully we will get some sleep but I am not betting on it! We'll see how Makily does, she has REALLY been surprising me ALOT lately.

I have a few videos of Makily in speech therapy with Mrs. Elon. I will get those up and going next week some time. In the meantime I will leave you with the fun "glimpse" into Makily's world.

SHE LOOOOOOOOVES music, her favorite thing is when I have the radio on in the car....LOUD! She isnt into baby music much and really seems to like Top 40 stuff. It's so funny to watch her JAMMING in the back seat. I swear I am gonna get into an accident trying to watch her booogying! Here is a video of her in the car having a blast.

*I have to add this....there were SO MANY DAYS when she was a baby that I believed I would NEVER have any fun memories with her. She has really blossomed the last year but especially the last 6 months. She is the happiest, most joyful kid and we are so blessed with what a sweet personality she has. Have I said how much I love this kid lately?*

ENJOY MY HAPPY BABY GIRL!

Photo and video editing at www.OneTrueMedia.com

Monday, May 14, 2007 9:10 pm

Went to the Pulmonologist today.

Makily is having another sleep study Sunday night. If and when she starts having apnea episodes they are going to try her on C-PAP. I don't know how well she will tolerate that, Makily HATES anything on her little face. They said they had several different masks they could try though so we will see. If she refuses the c-pap then they will try supplemental oxygen. Allen, Makily and I are going to Orlando Sat and staying through Tues morning. I will update when I know results on the study.

We have pretty much decided that Makily will be going to Maplewood Elementary for Pre-K starting August. We are VERY nervous about this but I really feel like this is going to benefit Makily is SO MANY developmental areas. I know it is what is best for her but it's still very hard for me to let go and trust someone else with her.

Makily's feeding pump is not holding a charge very long anymore. We charge it all night and for some reason it is starting to die after just 2 or 3 feeds...sometimes less than that. I called Apria and they said that our insurance had PURCHASED it outright for us last year. GREAT! After much research they realized that while they had billed insurance for it they never paid the full amount but had just been paying the monthly rental fee. FOR ONCE I AM GLAD THEY DIDNT DO THEIR JOB! We are getting the brand new "Joey" kangaroo pump on Friday. I am actually excited about this! How warped am I?

I had a wonderful Mother's DAy. Allen treated me like a Queen and Makily was her sweet happy self as always. Makily had Daddy buy me a new digital camera. I needed one badly as my old one kept malfunctioning. I love the camera but MY FAVORITE Mother's Day present was seeing Makily take her first steps in her walker. I am so proud of this child I could burst. She is such a blessing and a joy to be around. She continues to amaze me every day.

Here are a few pics from our weekend.

Makily in her Easter/Mother's Day dress (hee hee)


Makily getting kissies from her God Sister Aubrey.


Auntie Trish trying told HOLD God sissy Aubrey back from Bulldozing Makily over with hugs and kissies! LOLOL


Just being BEAUTIFUL


I have no idea HOW ON EARTH I caught this picture like I did but OH MY, everytime I look at it, I CRACK UP! This child is such a little character.

All I can think when I look at this is "WAAAAAAASUP!?"


Sign the guest book if you have a second.

Friday, May 11, 2007 9:13 AM CDT

Sorry i am just now posting this but I wanted to get more footage of her walking in the walker. I also wanted to do something special with it.

Enjoy!

Tuesday, May 8, 2007 6:10 PM EASTERN

LOTS of updating to do today.

First off Makily saw the Neurologist yesterday. Basically it was just a follow up. She hasn't had an EEG in six months or an MRI of the brain in almost a year so it's that time again. The EEG is next month and the MRI won't be done until July unless they get a cancellation for sooner. We could have it done sooner but I am not comfortable going anywhere else but Arnold Palmer Childrens with her. They know her history and she has to be sedated for the MRI.

Next Monday we are going to tour the two schools that we are thinking about sending Makily to Pre-K at. Then later that day we have an appt to see pulmonology about supplemental oxygen at night to help with her apnea and lack of REM sleep.

Okay are you ready for the most exciting update EVER!!?!?

Today Jenny (the PT) and I thought we would try Makily in a pediatric walker. I was skeptical because Makily does not like to hold onto anything. Well she made a liar out of me and held on just fine. I told Jenny that at home I stand her up and help her shift her weight to one side and she will take a step with the other foot on her own. She just started doing that Friday or Saturday night. We got brave thought we would see if we could get her to take some steps in the walker..........

AND SHE DID!

SIX, AMAZING, GLORIOUS STEPS!!!!

Jenny and I were both bawling. It was THE MOST AMAZING MOMENT IN MY LIFE! I just kept thinking about how the doctors told me she would never walk...SHE IS SO AWESOME. I am just TOTALLY in awe of this child. I mean the kid's right ear started draining yellow fluid today.....do you think that bothers her....oh no, she deals with that and then decides to show off BY TAKING HER FIRST ASSISTED STEPS IN A WALKER!

I didnt get the first time on tape but she did it one other time and I caught that. It's not anywhere near as good as the first time but it's something! I will post it tonight....if it's not up right now check back later and it will be here.

I AM SO PROUD OF HER!

Thursday, April 26, 2007 6:58 PM CDT

Hello All!

We ended up staying in Orlando all day yesterday (WED) and most of today.

Yesterday Makily saw the Nutritionist and the Gastro doc. They were both VERY pleased with Makily's weight gain and her growth! SHE IS ON THE GROWTH CHART....so she is in the 2nd percentile....but hey she hasnt been on the "normal" growth chart since she was 3 months old so this is a good thing! She was 24 lbs 10 oz and 33 inches TALL! The Nutritionist wants me to increase Makily's caloric intake by 100 cals a day AND also to increase her free water throughout the day. This will be tricky because if you give her more than 120cc/over an hour she retches like crazy. I am going to try to find some way to squeeze in one more feed in the day, we'll work our way up there though.

Makily's gastro doc is a CHARACTER! He is awfully nice and you can tell her really likes his job! He commented on Makily's cute outfit and all her pink! She slept through the entire exam and at the end he said "I must hold her for a moment". He picked her up and cradled her swaying while singing some song (I think he made it up on the spot LOL) Makily woke up and kinda looked at him like "who is this crazy man" LOLOL. He wants to Makily to have an upper GI to make sure her reflux is under control (since she still retches with more than 120/cc's and should NOT be), and he wants to check for gut malrotation. I have a VERY mild form of this and had alot of tummy problems when I was young. It is also very common in kids with Emanuel Syndrome and can cause Makily's pooping problems!
He wrote us a prescription for Miralax which is a stool softner that will hopefully make her more regular and will stop all the awful hard poopies she has been having.

Today we went to the Cleft Palate Team meeting. Everything went very well and good news.............

THEY DO NOT RECOMMEND A JAW DISTRACTION FOR MAKILY!!!

They feel her jaw has really grown out ALOT since birth and that it is NOT going to help with her sleep apnea. Their suggestion is to have supplemental oxygen at night while she is sleeping. I will be calling the pulmonologist and we will go back into see him about repeating the sleep study with 02 to see if that helps her breathing at night.

Makily was in a REALLY good mood and was SO social through the majority of the appointment. I love that she is starting to open up to other people rather than just family members and people she is used to seeing every day. She was smiling, and laughing at all the docs and nurses. It was cute and they of course ALL thought she was the MOST ADORABLE little girl EVER! They are right! ;-)

She still hasnt gotten 4 of her baby teeth yet. They said while it is delayed that it's okay and most likely she WILL get them, it may just take Makily a bit longer. Other than that everything went perfectly, they are very pleased with her growth and development. We don't have to go back to them for another year! HOOORAY!

That's all for now. Oh yeah one more thing.....

CAN YOU BELIEVE THIS KID IS STANDING UP!?!?!?



I am so terribly proud of her. Last night at the hotel I found myself just staring at her and wondering how I got to be so lucky and why God chose me to be her Mommy. She has overcome SO MANY things and far surpassed the expectations the doctors gave us in those early weeks.

I am so blessed. Life is good.

Tuesday, April 24, 2007 10:05 PM Eastern.

MAKILY IS STANDING UP INDEPENDENTLY!

WHOOOOOOOOOOOOOOO HOOOOOOOOOOOOOOOOOOO

She only needs a smidge of help for balance but other than that she is TOTALLY supporting her entire body weight on her two little feet! I AM SO PROUD! I thought I would try it late last week and after a couple of failed attempts SHE DID IT! She doesnt need the peanut ball in front of her anymore...just a little balance help but even "normal" kids need that when they first learn to stand.

Here is a video of it in therapy today. Please forgive the fact that it is sideways. I flipped it in my Kodak Easyshare program but for some reason when I upload it, it keeps coming up sideways!! SOO ANNOYING!




We have several appts in the next couple of days.

Tommorrow is Gastro, Makily is having poop issues. Gross but true. It's either watery or hard. I am going to ask for something for constipation and see what he thinks..after that we see the Nutritionist, hoepfully she will be happy with Makily's weight.

Thursday we are going to see the Cleft Palate Team. I have ALOT to discuss with them. Most importantly if there is anything that can be done about her apnea/sleep issues. The ENT suggested a Jaw Distraction which I am really not thrilled about. Plus Makily has an underbite rather than an overbite so pulling her jaw out will just make her bite off more than it already is due to the PRS. I have researched a little and I am going to ask them about doing an epiglottoplasty. IT seems less invasive and simpler than the distraction. I will update when I know.


I will leave you with another video of Makily just being her cute sweet self......her and Daddy were playing and I caught lots of her sweet giggles!



Sign the guestbook if you have a chance!

Sunday, April 22, 2007 9:53 AM CDT

Please pray for Makily's little boyfriend Brennan. He had a seizure and is in the hospital right now. His blood pressure is low, white count is up and he is needing oxygen. They think he may be septic and/or have pneumonia.

You can visit Brennan's site and offer words of encouragement at:
www.caringbridge.org/visit/brennanhammer

Please pray for healing and a quick recovery.

Makily and Brennan napping together in August.

Wednesday, April 18, 2007 12:54 AM CDT

I hate that I am putting this sort of thing here but I want as many people to see this as possible!

HERCULES FENCE
352-624-1331

This article is in the OCALA STAR BANNER TODAY!
http://www.ocala.com/apps/pbcs.dll/article?AID=/20070418/NEWS/204180336/1025/NEWS

Basically the story is that HERCULES FENCE has a sign that they change out every week.

This week's sign says

"What is on wheels and flies? A DEAD cripple in a wheelchair"

Even if this wasnt TOTALLY OFFENSIVE to anyone in a wheelchair or anyone who loves a handicapped person...it's not even a funny joke....it's just stupid.

I called to express my disgust and was told it was not "directed personally at anyone" IT'S DIRECTED AT ANYONE IN A WHEELCHAIR!

To the owner of Hercules Fence and/or WHOMEVER is in charge of putting up this sign....take a look at one of the "cripples" you are "joking" about. I hope you can also watch her montage and see all she has been through. Maybe then you could grow some sort of heart or a conscious and apologize to all those you have hurt and offended with your ugly sign.

Of course the person in charge of putting up the sign is NOT available and won't talk to anyone or return calls regarding the sign. They are too COWARDLY to face the people they are making fun of. What bullies! Isnt it enough that handicapped and those in wheelchairs are discriminated against daily? Why is it okay for this GROWN MAN AND BUSINESS owner to pick on them....especially when they are innocently passing by his business!? Will it ever stop?

SO MY PLEA TO ALL OF YOU IS THIS.

If you agree with me PLEASE help me and friends of Makily's overload their phones with complaints about this sign so they are unable conduct normal business UNTIL the sign is taken down. I tried to get their email address but was told they don't have internet....I find this hard to believe in this day and age....I AM SO ANGRY!

Sunday, April 15, 2007 12:49 PM Eastern

Makily had a great birthday party yesterday. We rented a bounce house for the kids. The adults ended up using it almost as much as the kids!
In addition to it being a celebration of Makily's birthday it was alos Makily's Great Grandmother's 80th birthday party! There was family and friends there that I had not seen in years. Many of which had not been able to meet Makily personally but have been following her through this site. They were all very happy to meet our little famous baby girl! She got LOTS of awesome presents including a small swimming pool and a tent to put AROUND the pool!!! Makily is so sensitive to the sun and heat so this was a great idea and a great gift. THANKS UNCLE TJ!
Thanks to everyone that attended and THANKS for all her wonderful gifts! She has clothes, toys and videos to last her at least another year!
It was very hot outside so Makily was a bit sleepy and lethargic. She spent some time outside but had to go in to cool off several times.

I will put up pictures from the party later but these are pictures from a photoshoot we did of Makily on Friday. They are of her in her custom made birthday outfit by Natalie owner of Shay Chic Boutique. Her site is at http://www.shaychicboutique.com/store/Default.asp
Makily is on her site and we have had things made by Natalie since Makily was born and her work is ALWAYS high quality and SUPER CUTE! Thanks again Natalie for making Makily yet another adorable outfit!

Makily's birthday photo shoot:







Her sweet toes.


**Are sepia photos AWESOMELY BEAUTIFUL OR WHAT!?!?**

Thursday, April 12, 2007 6:12 PM CDT

Makily had her developmental evaluation meeting with the school board today.

There was a ST, PT, OT, social worker, child psychologist and someone from the school board there.

Makily seemed a little overwhelmed at first. They were all in awe of how beautiful she is and they oogled her for the first few minutes. They kept saying what a little Angel she is, it's nice to hear that people who don't even know her can see what a sweet, pure spirit she has. One of them told me she should be a Gerber baby or a baby model and I told her that SHE HAD in fact modeled for Dr. Pierre's ad in Family Times. Oh how famous this kid already is! ;-)

She scored at about a 12 month level overall. I was not surprised as Elon, her speech therapist evaluated her a week or so ago and came up with about the same result. (*hey Elon you are famous again*) I am not sure how to feel about this. Part of me is relieved that it wasn't as bad as I had thought it would be. Another part of me realizes that at three she is cognitively one and that is sad. I am not in denial, I know Makily is delayed but it's just hard to hear a professional say it.

I took a copy of her medical history and hospitilzation summary. They appreciated that I brought that with me and referred to it several times during the meeting. They do seem a little overwhelmed with all her medical problems. While I realize that Makily is medically fragile I guess since I live with her I don't think about how much is truly going on with her until someone from the outside looks in.

Allen and I are going to tour two schools and meet the teachers for the Pre-K classes. I also want to get a feel for the programs and therapists that each school offers before we make a decision on where she will go. Those that live in this area the choices are Maplewood and Ward Highlands...if you have any experience or advice on either I am more than willing to listen! I insisted (and they readily agreed) that Makily needs to be in a school with a full time RN on staff.

We did establish that they are recommending Makily have one on one oral motor therapy EVERY day. This is HUGE and I really hope that it gets approved because I feel this will help Makily continue to get over her oral and feeding aversions. It will also build up the muscles in her mouth and airway. She will get PT and OT at school and Allen and I intend on continuing her private therapies with Elon and Jenny.

As for Doodles she is still getting over pneumonia. She is VERY snotty and slobbery (we stopped her Robinul because it will make it harder for her to get all the snot out) but she is happy and smiling again so that is what is important!

Monday, April 9, 2007 8:53 AM CDT

My kid is JUST amazing.....

She woke up this morning acting like herself again.

We took her back to the ER last night to get her 2nd shot of Rocephin. The doc asked me if we wanted her admitted. *sigh* Allen and I discussed it and decided that they really couldnt do anything differently there than what we were doing with her at home...with the exception of IV fluids. She was taking pedialyte 45cc/hr continuous so we just didnt see the point. They gave her the second shot, we went home and gave her the steroids and then some Triaminic (expectorant). She woke up this morning HAPPY AS CAN BE! "Go Baby" came on the Disney channel and she started talking, yelling and laughing. She was acting hungry so I started her back on her formula and she is doing fine with that so far. She is back to her old self again. We have an appointment with Dr. Pierre today for her to check her over and possibly for another shot of antibiotics.

Thank you for praying for my baby girl.

Sunday April 8, 2007 1:17 pm.

Makily is no better. She coughed and was up all night. She retched a lot with her formula last night so we gave her a phenergan suppository. She was still retching an hour later so we just have her on Pedialyte right now.

She is still running a fever even with the Tylenol and Motrin. The lowest it's been so far today is 101.

She is getting breathing treatments every 4 hours. We called the pedi again today and she is calling in some steroids to help open up Makily's lungs and said we could get some Mucinex to help Makily get all the junk up. I have tried suctioning her but that makes her SO UPSET and really defeats the whole purpose as she makes more mucous from crying and fighting me.

We didnt go to church this morning because we were all basically up most of the night, and Makily couldnt stop coughing. We are going to Makily's Nanny and Pawpaw's for easter lunch and after that we are heading back to Peds Express for her second shot.

We go see Dr. Pierre first thing in the morning.


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

Saturday April 7, 2007 5:16 PM

Makily has pneumonia.

She has been running a temp on and off since Thursday night. Last night she was in a pretty good mood, we dyed easter eggs (her first time by the way).

My first egg!


She woke up at 4:30 am retching, coughing and hot. Temp was 101.4. Gave her a breathing treatment and motrin and she went back to sleep.

I got her up at 9 am and she was warm....temp was 102.5, gave more motrin, checked an hour later and it was at 101. Called the pedi and they said to go to peds express. We spent 4 hours there.

Long story short she has pneumonia. She got a shot of Rocephin today and will get another tomorrow. Then we go to Dr. Pierre on Monday to see what to do from there. Hopefully we caught it early enough that it will not get bad enough for her to be admitted. I hope she is feeling well enough for us to at least take her to church in the morning for Easter. I am really sad because she is sick for Easter. We had planned on doing pictures in her Easter dress today. Maybe she will feel better tomorrow.

Right after her shot, before we left Peds Express.


Please pray for Doodles.

Happy Easter!

Sunday April, 1, 2007 12:01 AM

Today is Makily's THIRD birthday.

The past three years have been such a whirlwind of experiences and emotions. There were times I didnt think we would make it this far.

Many of you know that the Makily's birthday and the time surrounding it is very hard on me. It brings back MANY painful memories that time WILL NEVER fully erase. I prayed that this year would be different for me but I started having a rough time Thursday night and well this evening has been a little rough.

We are going to Makily's favorite park tomorrow and spending a nice family day together. Her party will be in two weeks with close friends and family....I had the CUTEST outfit made and will be posting lots of pics of that.

To Makily my dearest, purest love,

There are no words in the English language to describe how incredibly proud I am to be your Mommy. I thank God everyday for entrusting you to your Daddy and I. You are THE MOST amazing person I have ever had the honor of knowing. I love you more than there are stars in the sky or grains of sand on the earth. You have made me the person I am today and I can only pray that I can be the mother you deserve. For you deserve only the best my baby girl. You are so strong and determined. All of your accomplishments are because you NEVER give up, you ARE my hero and MY strength. You show nothing but unconditional pure love....what a miracle you are.

Love you forever Doodles
Mommy


***4-2-2007 CLICK ON THE VIEW PHOTOS LINK...I have added pictures we took of Doodles yesterday***






Makily first three years in seven minutes! LOL

Sunday, March 25, 2007 8:29 PM CDT

Things are going back to normal here!

Makily is back on her regular feeding schedule. She is tolerating that well. My aching back tells me she has gained all her weight back and probably a little more!

THe orginial stander we got for Makily she grew out of within a month or two. It had been ordered almost a year before we got it so obviously a year of growth and well the thing didnt work long for her....

Makily's friend Brennan grew out of his stander and so he gave Makily his old one! We have been using it ALOT. I don't like the way the stander looks (reminds me of Hanibal Lector being wheeled around minus the face mask) but Makily is really starting to LOVE IT! She likes being pushed around in it and I am happy to say she will grab onto the wheels herself. I am hoping eventually she can push herself all over the place in it! I am actually becoming a pro getting her in and out of it. Whooo HOoo! She goes in the stander at least 3 times a day for 20 minutes at a time. Then she is either in the jumperoo or her walker. We are trying to keep her as active as we possibly can. She almost never needs the Bumbo anymore because she is sitting up by herself so well! I use it to do her hair or if she isnt feeling well and that is about it.

We have so many appointments set up for next month. I rescheduled her developmental eval for Pre-K. I believe it's April 19 but I have to double check that!

We went through her room today and got rid of so much stuff. Alot of it was stuff I emotionally didnt want to part with. Things that she either can't use anymore or NEVER could use. I stumbled upon several items that brought back some tough memories for me. My neice Tara was helping so she was good at distracting me and changing the subject.

This isnt the best time of year emotionally for me. (April 1 is Makily's b-day and it brings back lots of sad memories.) Every year I hope that I will not have sad thoughts or feelings but I do. I imagine that maybe one day it will get easier though. I guess I am just not there yet.

I will end this entry on a happy note though. Makily is really such a happy child all the time (mostly) and I caught a great video of her and her Aunt/Cousin Tara singing together. I love this child's smile...nothing makes me happier than seeing her smile like this.

ENJOY!

Monday, March 19, 2007 10:18 AM CDT

Makily is doing much better.

She still has a little bit of diarrhea but it is NOTHING like it was. She was FINALLY able to take her entire night feed on through Friday night! First time in 12 days! We are still going slow with her daytime feeds but she is in a much better moood and I think we are through the worst of whatever she has/had. The Rota test hasnt come back yet but I will be very surprised if it comes back negative. Either way I don't care because she is getting better now! ;-)

We are working on getting Makily on a schedule again. She gets her bath at 9:30, after bath snuggle with mommy, massage, diaper change and meds...then off to bed. She falls asleep in about 30 minutes now and is AGAIN sleeping through the night! Once we have her settled into this routine we are thinking about moving her to her room....again......*lump in my throat*. She hasnt had another seizure since June, her meds are controlling things and we have the apnea monitor too. I know this is what is best for Makily because she is ALWAYS under me and Daddy's wing. She starts school within the next several months and so we need to let her find some independence from us....no matter how much it breaks my heart. Honestly this will be harder for me than for Makily. I have had the child with me CONSTANTLY for the past three years and so it makes me sad. :-(

We have lots of appts coming up soon. I am going to list them here. It helps me to remember! LOL

Neuro Follow up WED March 28 2:30
Gastro Follow up Wed April 25 9:30
Dietician Wed April 25 10:00
Cleft Team Thursday April 26 (no time yet, they will send)
Cardiology Follow up June 11 at 1:00 (EKG w/ possible echo)

I have a few videos of Makily playing with Daddy and her laughing and having a BIG OLE TIME. I will post them sometime today so if they arent here now check back later. They are SOOOO cute.

Sign the guest book if you have a chance.

Friday, March 16, 2007 10:11 AM CDT

Makily is STILL sick. I am starting to get worried.

She has had diarrhea now for 10 days. She has been having problems with her full feeds for at least 7 of those 10 days. Yesterday we had to switch her to pedialyte instead of formula because it was making her retch. She still is having diarrhea 3-4 times a day. Her little hiney is VERY red even though I am CAKING desitin on it.

I am waiting on the results from the Rotavirus test. I am hoping that is what is causing all this at this point. If it's not Rotavirus then it makes me concerned about what it could be.

Please keep Makily in your prayers.

Wednesday, March 14, 2007 8:00 PM CDT

Makily isnt feeling much better.

Her cough has improved but she is still having MASSIVE diarrhea. We are having some problems with her retching alot too. Dr. Pierre thought it was most likely from the antibiotics/steriods that we only did for two days. The tummy problems arent much better now though and it's been almost 4 days since she had the last dose of those meds.

She is looking skinny to me. I know she is loosing weight, when she was weighed at Dr. Pierre's office she was down one pound to 23 lbs 10 oz. She retches if we feed her any faster than 30 cc's an hour so I have her on the pump basically all day. I turn it off if she retches and then turn it on an hour later. Dr. Pierre sent stool containers for me to collect a sample (oh joy...oh fun) to test for Rotavirus. She had it last year this time and she is acting the same way now.

ON a good note her mood is MUCH better and she slept through the night last night....THE FIRST TIME IN OVER A WEEK! I am so tired but it was great to get a full night's sleep! She hasnt had ANY therapy this week and most of last week. I put her in her jumperoo today since she was acting happier and within minutes she fell asleep. I went to take her out and she woke up and started jumping. Poor thing wants to play but is soo tired. :-(

Here are a few pics of her from today.



Asleep and STILL PLAYING with her G tube...that is a constant thing *sigh*

I will update again when we get the "poop test" back LOL

Friday, March 9, 2007 9:48 PM CST

Makily is not feeling well. Since Tuesday night she has had a nasty cough. She has been rather cranky and has STOPPED sleeping at night. The last two days she has woke me up crying and coughing at 3AM. She slept in the bed with me the rest of the night occasionally waking up crying and coughing. I took her to Dr. Pierre Thursday. Her right ear is full of fluid and Dr. Pierre expects that it will start draining very soon. When it does I have drops to put in. She also has sinusitis and Dr. Pierre gave us medicine to help her with all the secretions. All the snot is dripping in the back of her throat though and so that is what is causing the constant coughing. She gets so frustrated because she will just get comfortable enough to rest and then start coughing. Her lungs sounded good though so I am hoping that tomorrow she will be feeling better.

Needless to say I had to cancel the appointment for her evaluation for school. I am waiting on a call with a new appointment. We have LOTS of other appointments coming up in the next several weeks. Basically follow ups with Neuro, Gastro, Craniofacial team, Nutritionist, ENT and Audiology.

We see the craniofacial team the end of April to discuss the advantages/disadvantages of doing a jaw distraction. I will keep you posted on that.

Finally I am going to post a couple of new videos of little Makily. I AM SO PROUD OF THIS KID I COULD JUST BURST! She has started standing AND she will go from standing to sitting WHEN INSTRUCTED! This is HUGE FOR HER! Not only is this great for Makily physically but it is showing that she understands what we are saying to her and what we want her to do.

This video is Makily standing up like a big girl:


When Makily stands she used to just start crying when she wanted to sit. Well after several times explaining how to "show" us she wants to sit, now she shows us instead of crying!



**Please pray that Makily's will be feeling better very soon. I havent forced her to do much therapy this week. I tried on Tuesday and she starting retching. Also pray that she will continue to excell and gain more and more strength in her little arms and legs.**

Sign the guest book if you have a chance!

*****Update March 10, 2007 11:18am*****

Makily is not doing better this morning...she is worse. Her cough kept her up all night and has just become CONSTANT. I spoke with Dr. Pierre this morning (she wasnt even on call, she helped us anyway...have I said how much I love her before?). She said it may have moved down into her chest now. I did a breathing treatment and she is coughing less already. We will continue this along with a steroid that Allen just went to pick up from the pharmacy.

Monday, February 26, 2007 3:55 PM CST

Sorry it's been a while again. Believe me I have definitley heard about it!

As always things have been busy here. We all got the flu bug here and of course on different days. First Makily had it, then Allen and of course I HAD to get it. I am just glad Makily recovered from it so quickly. We had been having some pretty rough G tube issues. It was leaking like a faucet again. THANKFULLY all we needed was to put in a larger size button.

Makily is doing well in her therapies! Last week we had her STANDING with her hands on the peanut ball....and no one was touching her. She did this several times for 5-10 second intervals. I have been doing it here at home with her also. Of course she still goes in that jumperoo everyday also so I am convinced this is helping to build up the strength in her little legs. I ordered a peanut ball for here at the house so I can do it with Makily several times a day.
We are still of course working on oral eating. It's really a back and forth battle...she will do good one day...horrible the next.

I have an appointment to see Early Steps tomorrow. It's Makily's "transition" meeting. Honestly I am dreading it. She will be starting special needs pre-school in April. I don't know what I am going to do. I am praying that the programs we want for Makily will not end up being a battle to get her in. She will be recieving her therapies at school (although I do plan on continuing her outside private therapy). I believe that she will only be going 2-3 days a week for school. I will find all that out tomorrow.

Oh and here is a little humor for you. Makily was crying and flailing her arms around a week or so ago because her G tube was leaking. I was changing the gauze on her tummy which she didnt appreciate. Well she ended up socking me RIGHT in the eyeball. I tried to ignore it for a few days....then it got pretty painful but I had the flu so I just dealt with it. I finally went to the eye doctor and Makily tore my cornea! The doctor gave me some antibiotic drops and moisture drops for it. He says it will heal on it's own but to wear sunglasses and keep doing the drops for at least six months. I can't believe my tiny little angel ripped my cornea. Now when she gets mad I say "Oh no don't rip my cornea's out". Makily actually did something for the first time that day at my appointment. I didnt have time to get her stroller out of the car so I was going to have to hold her through my exam (not easy!). The nurse asked if I would like her to hold Makily for me. I told her we could try it and MAKILY WANTED NO PART OF IT! She WOULD NOT go to that nurse and kicked until the nurse walked away. This is actually a good thing as it shows she is developing "stranger anxiety" and that IS a developmental milestone!

We are still waiting on an appointment to talk to the craniofacial team about the jaw distraction. I actually need to make a call AGAIN to see what the hold up is. We are still not thrilled about this "option" but it is something we feel we need to be informed about before we make a decision either way.

I will leave you with this. It is a montage I have been working on for several months now. It's basically the story of Makily's life with pictures etc. I hope you enjoy it as much as I do.

Make photo slide shows at onetruemedia.com

Thursday, February 8, 2007 9:24 AM CST

It's been a CRAZY two weeks here in the Caldwell household.

We began a project on our guest bathroom that initally was just going to be replacing the tub. (it's needed it for a long time) Well we ended up gutting the bathroom. Of course to save money we have done it all ourselves. NOT FUN! We ran into lots of road blocks and Allen being Mr. Handyman figured them all out and we worked through them. The worst part is over now and we just have grouting to do in the tub left. In the meantime we have been having to give Makily baths in our shower and SHE HATES IT!

Makily developed in ear infection late last week. Allen took her to Dr. Pierre because I was working. She gave us drops to put in and that seems to be clearing up. Monday Makily started retching with her feeds and crying constantly. I ended up stopping all formula and doing pedialyte VERY SLOWLY for 24 hours. This was rough on her but I am HAPPY to say she is doing SO WELL today. She didnt sleep at night for a good 4 days and it so brought me back to when she was little and never slept but cried ALL THE TIME. I am SO GRATEFUL for what a good girl she is now. I look back at the early days and it's like she was a totally different kid! Granted back then she couldnt help it, she had lots of gastro issues going on that we didnt yet realize.

Makily was supposed to have a transition meeting with Early Steps last month. I called because no one called me to schedule it and AGAIN I was told I would get a call back. I also need to get Makily new AFO's made and of course they couldnt help me with that...said someone would call me. Guess what...it's been over a week and no call. I am so tired of having to harrass people to do their job. I can't keep myself straight half the time and having to call people OVER AND OVER again to do WHAT THEY ARE SUPPOSED TO is driving me batty! I am calling them again today.

I have a video I am going to try to get up today so if it's not here now check back later. It's Makily "dancing" to some pretty funny music in her JUMPEROO!

sign the guestbook if you have a chance!

Monday, January 22, 2007 9:27 PM CST

So sorry for the lack of updates lately. Things seem to be so busy and I sometimes feel like I can't keep up!

Several good things have been happening!

First of all Makily sat up in a big girl high chair at a restaurant! We tried this about six months ago and she screamed and flopped over the entire time. Here she is sitting up proudly!



She is sitting independently on her own now all the time. Every now and then when she is tired she will topple over but for the most part she has mastered this skill.

She also has decided that she LIKES the pacifier. She sucked on the paci 12 TIMES at therapy last week with Mrs. Elon! I have been very aggresive lately with the paci, oral eating and stim and FINALLY it seems as though she is actually enjoying it rather than screaming the whole time. I have even got her to the point she will sleep with the paci in her mouth. Here is a picture from today's nap!

**I am waiting for the first rude, nosy person to tell me she is too old for the paci....they will regret saying a word to me!**
She is doing more chewing and playing rather than sucking but you have to remember...this is a child who wouldnt even allow you to touch her mouth let alone put a paci in there for any period of time! PROGRESS IS WONDERFUL!

Our family sent our blood samples off for analysis and research last week. There is a geneticist doing a study on unbalanced and balanced chromosomal translocations in Sweden. Since I am a carrier and Makily is unbalanced they wanted to examine our DNA. We also sent other family members blood to check and see how far the "genetic flaw" goes back. I think it will be interesting to know. Who would have ever thought I would be involved in a genetic research study!? CRAZY!

We had our ear tube follow up with Dr. Moser (ENT). He said her tubes are looking great. He is not sure if there is a maxillofacial doctor in Orlando or not so he asked me to contact Makily's plastic surgeon and see, if not he will just refer us to the doctor in Jacksonville regarding the jaw distraction. We still have not made a decision one way or the other and do not plan on making one until we have spoken with all the other doctors. I am still struggling with that whole scenario.

We took Makily to SeaWorld this weekend and to a nice resort in Orlando with a awesome pool/waterpark area. We were able to get free tickets and a cheap rates at the hotel since it's the winter season. Makily's Aunt/Cousin Tara's boyfriend Anson aka MMMBOP works at Busch Gardens so he got us the free tickets and we spent the day with them and The Teals. The girls had a great time and it is so good to see Makily smiling and laughing. Nothing makes me more happy than that.
We did have some problems with her G tube the last several days. Makily had been rather fussy and had been pulling and scratching at it MORE often than usual. I knew it needed to be replaced but I dread it so much and she hates it so I had put it off. I finally did it last Wed and it leaked and gave us problems really until yesterday/this morning. It seems better now but she was so fussy and miserable in the meantime. Sometimes I really hate that thing!

Here are a few pics from the last couple of weeks. ENJOY!

One of her favorite past times....SWINGING!


One of Mommy's favorite past times....swinging with Makily!


Daddy and Makily swimming!


We have an appt with Neuro on Feb 5th at 3:00 just as a followup. I will talk to them and get their thoughts on the jaw distraction too. I will update again when I know more.

Sign the guest book if you have time!

Lots of love!
The Caldwells
Allen, Trish and little Makily!

Thursday, December 28, 2006 2:47pm

Good and Bad news.....

Makily got her ear tubes put in yesterday morning. That part went great and he was able to suck all the "gunk" out of her ears and now they are clean and tidy. This is good.

He did a bronchoscopy/laryngoscopy which is just a big long word that means he used a catheter with a camera on the end to look at her tonsils, adenoids and basically every structure of her airway and throat. He was checking to see if her weak trachea and larynx had gotten better or worse. He was trying to find the culprit for her sleep apnea and lack of REM sleep. The plan was to remove part of her adenoids to help with breathing and ear tube function.

Her tonsils and adenoids are TINY. He said there is NO WAY they are causing her breathing issues. They are actually smaller than normal but this is really okay. He didnt take any of her adenoids out since they are so small they are definitly not causing any problems.

The weakening in her trachea and larynx is all but GONE. They are both very strong now and he was happy with that. This is all sounding good right?

I questioned him on how strong her trachea was because she still has VERY VISIBLE retractions in her throat when she breathes in. It's AWFUL when she is sick or if she is angry and crying. It's hard to explain but her neck looks like it is gonna cave in right in the center.

Then he dropped the bomb.

Makily has a weak and VERY FLOPPY epiglottis. Doesnt sound like a big deal right? That's what I thought.
The epiglottis is what "folds back" when you swallow to protect your larynx and trachea from getting food into your lungs etc. Since Makily's is weak and floppy it's NEVER functioned properly. This explains alot as far as her difficulties and fear with swallowing. She honestly is protecting her airway which is why she hates to swallow. She never knows if it's going down the right way or not. Also since it's so weak and floppy when she takes a breath her epiglottis gets pulled down into her trachea and causes an obstruction. This is why she is so noisy and why her neck all but caves in. She is sucking as hard as she can to get a normal breath. This is made worse when she is upset or crying obviously.

Dr. Moser believes this is the main contributing factor in her sleep apnea and the fact that she is getting only 3 percent of REM sleep. When she sleeps her body relaxes and she is not trying as hard to breathe in. This causes her to desat which in turn signals Makily to wake up and breathe. It's a cycle the entire time she is asleep.

He also says it may be one of the main reasons why she hates orally eating. While her swallow study was good Makily ONLY allows VERY SMALL swallows when she does swallow. She did aspirate into her larynx once when I force fed her during the swallow study and she was crying.

ON TOP of her epiglottis being so weak, Makily has PRS (small jaw, posteriorly placed tongue etc). Dr. Moser feels that the combination of all these things is causing the sleep and eating problems. If her jaw was longer and pushed more forward it would in turn pull her tongue forward, and would also strengthen her epiglottis.

The only way of doing this is a jaw distraction. It has been mentioned to Allen and I in the past and we have always said "ABSOLUTELY NO WAY!"

(to see what a jaw distraction looks like just do a search for photos of "jaw distraction")

If you have ever seen a dwarf have limb lengthening...this is the same type of process. Just on her jaw. First they would break Makily's jaw bone and then insert pins and screws. This would be left in her face for 4-6 weeks. The screws would be turned daily to lengthen the bone.

I cannott imagine doing that to Makily. It makes me cry just thinking of having that contraption on her little angelic face. I am nauseated just thinking of having to turn the screws. The only reason Allen and I are giving it a second thought is that if she has it done it would help her with her sleeping issues since it would straighten out her airway. This would mean she would more alert and awake. I imagine it would help with her stamina, strength and development. Can you imagine trying to work out on 3 percent of REM sleep? That is what Makily has been doing all her life.
If it improves her swallow then it is possible she would FINALLY decide she wants to eat and we could get rid of the G tube. Getting rid of her G tube for us would be a dream come true. I have a serious love/hate relationship with her tube. I love it because it keeps her alive but I hate it because it has caused her so many problems and pain in her life. I can't imagine what Makily's tummy would look like without it.

Of course as with EVERY surgery or procedure Makily has ever had....nothing is guaranteed.

Allen and I are both at a loss as far as what to do. I do know that Makily will not understand why this is being done to her. I wish there was another way. I can't even imagine how I would take care of her with that either...how do you bathe, change, brush hair or teeth with that on your face?

They are sending us for a consult just to talk to the craniofacial team that does it. We can listen to what they have to say but we wouldnt have to do anything at all if we don't want too. Dr. Moser does not believe they can do this in Orlando either, he said he thinks we would have to go to Jacksonville to have it done.

I don't know if I can put Makily or my family through this. Just looking at her imagining what it would be like with that contraption on her face brings tears to my eyes. On the other hand I feel guilty thinking of what benefits she *COULD* possibly have in the long run from it.

Please pray for us. We don't know what to do.

Here are a few new pictures from the last week or so.

Makily with her Great, GREAT Uncle Gene


A sleepy Christmas baby


Love this picture, she is so happy here! Disney on mainstreet.


Pre-Op 12-27-06


After some happy drugs (nasal versad)

Thursday, December 21, 2006 9:51 PM

LOTS OF UPDATING TO DO TODAY!

First off our Disney trip was FABULOUS! We had a BLAST and Makily enjoyed every minute. She is always a good girl but she really was exceptional. I am so proud. We were able to meet up with the St.Pierre family. Stephanie is the founder of the www.c22c.org site that connects other families dealing with chromosome 22 disorders. It was so nice to spend time with her, Martin, Maia (12 w/Emanuel Syndrome) and little Jaida (2).
The highlight of the trip for me was going on the "It's a small world" ride. Makily was so excited that she literally giggled, kicked and "talked" through the entire ride. Maia enjoyed it so much that she would become so overwhelmed with laughter and happiness that she would start crying admist her giggles several times. This OF COURSE made me and Stephanie cry. Maia has had a really rough time lately. She has had a chest infection on and off for a month. Her scoliosis is also causing her to be uncomfortable and so she has been pretty miserable. Seeing her so overwhelmed with joy was VERY TOUCHING.

Makily also did something else that totally suprised us. We took her to the Muppets 3D show. Allen tried to put the 3D glasses on her before the show started and she wanted NOTHING to do with it. He tried again once the show got started and SHE KEPT THEM ON...HAPPILY! She belly laughed through most of this show. I LOVED WATCHING HER!
Her eyes look crossed here but I am sure it was alot for her brain to process. She is reaching out for some 3D image here....LOLOL



I am officially working again. Tues and Thurs I watch Makily's PT Jenny's little girl Addison. It's really a great opportunity. Jenny has a "play area" right in the back of the office. I get to take Makily with me. She enjoys watching Addison play and I can really see her studying the things Addison does. I am hoping this will give her even more motivation to continue working so hard in therapy.


Now on to the not so great news.

Makily is having surgery Wednesday December 27, 2006. She will be having a bronchoscopy/laryngoscopy, partial adenoidectomy and typanostomy tubes placed....again. Dr. Moser says he does not believe her tonsils are contributing to Makily's mild sleep apnea. He says that there are several things that can cause sleep apnea and you never can really be sure what is causing it. He says removing the majority of her adenoids will possibly help with her sleep apnea and that it WILL help the tubes in her ears to function better and hopefully longer. The surgery is scheduled to be outpatient and we plan on coming home the same day. Please pray that all goes well and Makily recovers quickly.


I was recently contacted by a researcher in Switzerland. She is doing a study on 11/22 carriers (like me) and those with unbalanced 11/22 translocations (like Makily). Our family is going to be involved in this study. Hopefully this study will help to determine what causes the developmental delay in Emanuel Syndrome children. It may also give some type of information as to why some kids are more severe than others.
If you or anyone you know of are 11/22 carriers OR have unbalanced 11/22 children email me and I can put you in touch with the head of this current study.

Please sign the guest book if you get a minute!

Here are some pics from our Disney trip. ENJOY!

Prince Somebody, Me, our little Sleeping Beauty and The Sleeping Beauty.


Steph and I in front of the castle


Makily and Daddy on the tram.


Me, Makily, Aunt Cousin Tara and Anson aka MMMMBOP


Me loving Maia!

Monday, December 4, 2006 10:06 PM eastern

Makily had her re-check today with Dr. Pierre.

HER LUNGS ARE CLEAR! WHOOOOO HOOOOOO!

No more pneumonia. I am so happy. She has fluid in both ears but that's really normal for Makily. We see the ENT next week and that is when we will discuss when to put in a new set of tubes and what he feels about the bronchoscopy and possible removal of Makily's tonsils and adenoids. Her sleeping is SO erratic. She stayed awake all night long last night talking. Between Makily "talking" and her Daddy snoring Mamma got NO SLEEP. *yawn* Oh yeah Makily weighed in at a WHOPPING......22 lbs and 10 ounces! She is growing so much lately. She is basically wearing 12-18 months and some of that is small on her! She is still in a size 3 or 4 shoe though...tiny feet!

We are planning a trip to Disney World! It will be Makily's first time there! We are going the weekend of December 16th. I just found out that Stephanie (chromosome 22 group owner and GREAT friend of mine) will be coming to Florida that week with her family!!! I hope we are able to meet up at some point and maybe visit the parks together. A good friend of mine, Denise that works for Disney is going to be able to get us FREE TICKETS! This is saving us ALOT of money as everyone knows IT'S EXPENSIVE TO GO! Life is short though and I really can't wait to watch Makily experience Disney. THANK YOU DENISE, YOU ROCK! Makily enjoyed SeaWorld so I just know that Disney will just make her SO HAPPY! YEAHHHH! Allen and I havent been to Disney in a loooong time so I know it will be very different. In fact I don't think we have been since our Honeymoon in 2000! WOW!

I took this video of Makily and her Daddy last night. She was in a VERY CHATTY mood! She likes to sit on her Daddy's tummy and they have long, humorous talks together. She is such a funny kid.

ENJOY!

PS PLEASE SIGN THE GUEST BOOK IF YOU HAVE A SECOND!

Monday, November 27, 2006 10:19 PM

Allen and I took Makily back to Dr. Pierre today for her recheck. I thought for sure that her long coughing spell on Friday cleared her lungs out, I was wrong. Dr. Pierre says there is still alot in there. She has 3 more days of antibiotics and we are continuing breathing treatments every 4 hours. We stopped the steriod that goes through the G tube and are giving her an inhaled steroid (Pulmicort) twice a day. Hopefully that will clear her up. She has been very happy and talkative today so that is a good sign. She hasnt been running a fever since last week either so I know she is getting better, it's just taking her longer than we would like!

Saturday, November 25, 2006 10:04 PM

Hope everyone had a great Thanksgiving. Ours was nice. Makily slept through alot of it, but when she was awake she was very content and happy. I took a few pictures that I added today and while she looks a little sickly I still think they turned out cute!

Friday morning she woke up coughing like I have never heard her cough before. I was actually impressed! She got ALOT of "gunk" out of her lungs. She had not been vigorously coughing and I was worrying because that is what she needs to do to get rid of this pneumonia! Today she is doing very good, still has a cough and congestion but she looks, sounds and acts like herself. She was napping earlier today and I could tell she was really getting good sleep, she kept smiling over and over. It was really cute.


Her G-tube has still been leaking pretty bad. I am praying that as she gets better, it will stop leaking but the site is very red and irritated. Please pray that it stops leaking. It really bothers Makily and while we are keeping dry gauze with cream on it constantly it still looks bad. We have gone through almost 4 boxes of split 2x2's in less than 5 days.

We go back to see Dr. Pierre on Monday and I am praying for her lungs to sound clear as a bell!

Monday, November 20, 2006 **AND NOVEMBER 22, 2006**

Sorry I havent updated again.

I spoke with Dr. Pierre yesterday and she said that Makily's white count was within normal range. I thought this was good but Dr. Pierre is still concerned. She told me that 87 percent of Makily's white cells are either Neutrophils(immature white cells) or Bands (REALLY immature white cells). Basically her body is working really hard to fight off the infection and so it's used up the majority of her mature white cells and now it's throwing out immature white cells to try to keep up. *sigh*

She is on a HIGH DOSE antibiotic, steriods and breathing treatments every 4 hours. Then we do CPT on her back which usually makes her fall asleep instead of cough *sigh again*. She didnt sleep well last night and insisted on Daddy holding her while she slept most of the night. She has REALLY bad diarrhea from the steriods and antibiotic...and of course in true Makily fashion her G tube is leaking like a faucet. We are starting to run low on belly gauze again! I bought some extra gauze from the store today.

She isnt tolerating her feeds well. Her last 2 feeds yesterday she retched really hard and then hysterically cried....which then led to more gagging and retching. We turned her WAAAAY down to 30cc/hr and have left her on that continuously and she is doing okay so far.

Please pray that she will feel better tommorrow and will be able to enjoy Turkey Day.

Monday November 20, 2006
Makily has pneumonia.

She woke up at around 3am retching and coughing. She did this on and off for about 20 minutes. I turned her feed off and she fell back asleep. She awoke again at 6am doing the same thing but this time she was HOT! Her temp was 102.3. She was also kind of lethargic and limp. I immediately gave her Tylenol. I really thought she was going to have a seizure, she was breathing fast too. She had diarrhea really bad and then fell back to sleep. She woke up again coughing and I gave her a breathing treatment which just made her madder and she started shaking (side effect of DuoNeb) I called Dr. Pierre's office as soon they opened and we went in. Her temp had spiked up to 103.6 at that point. We gave her Motrin and I stripped her down to just her diaper. Her 02 sat was 86 percent and she was panting. Her heart rate was in the 180's. We gave her another breathing treatment with Xopenex and then went for a chest x-ray. The chest x-ray revealed Makily has viral pneumonia in the lower part of her lungs. Dr. Pierre said that since it's so low in her lungs that it's harder for Makily to get it up and out so she is concerned it will turn into bacterial pneumonia. She gave her 2 shots of Rocephin and did a CBC and blood cultures. If the CBC comes back with an elevated white count she most likely will go ahead and admit her to Munroe. Otherwise we are hoping to be able to manage this and care for her here at home.

She had a wonderful weekend and this is a big surprise because she has been so happy. We went to Light Up Ocala on Saturday and had A BLAST. I got up and danced with her on the square and she giggled and pulled my hair she was so excited (hair pulling is acceptable in this house...Makily gets excited and will ball her fists up..usually my hair is in the way and it ends up getting yanked!) I supposed that is where she picked this virus up. *sigh*

I added a video of Makily jumping in her Jumperoo from Friday. I am also attaching another "jumping" video of her and her crazy Daddy from the same day. She adores him and they have so much fun together.

Please pray that she will be able to recover from this here at home.

Makily and Daddy JUMPING!

Sunday, November 12, 2006 5:30 pm eastern

Sorry for the delay in updates. I had a few emails telling me to get over here and get busy! So here it is.

First off we went to Orlando on Tuesday. Makily had her swallow study done at APH Childrens. The speech therapist was extremely nice and remembered us from the Cleft Palate Team. It's so cool that everyone remembers my kid and her name (even if they pronounce it wrong!). The swallow study went better than I had imagined. Makily was VERY good and didnt fight me hardly at all. We started out with the bottle and got a few small swallows in. She did not aspirate. Then we went to using baby food on a spoon. She did well and swallowed fine....no aspiration. They asked me to push her to get a larger swallow in. I switched back to the bottle and forced a large amount of formula in and she started to fight me a bit....she also was crying and at that time she did aspirate a TINY amount into her vocal chords. Then they asked me to feed her a Poofie. THIS WAS THE COOLEST THING EVER. I could see it on the screen go into her mouth and watch her chew it up.....I ALMOST CRIED. You have to understand this is a child that wouldnt even allow you to touch her face when we started therapy and now she is allowing you to place a poofie in her mouth and is CHEWING IT!? AMAZING! Makily was hilarious...she saw the screen and kept trying to peer around the corner to "watch TV". She is such a TV junkie!
So basically they said that we are okay to continue oral feeds, but to stop if Makily starts fighting because obviously that's when she gets into trouble. Usually she is more coorperative with me at home than she was there so I am encouraged and very happy with her swallow study. Her speech therapist Elon was so excited she was screaming and yelling when I told her how well it went!

Wednesday we had the followup with the Pulmonologist that performed Makily's sleep study. They explained that you sleep in stages. Stages are 1-4 and then of course REM. The majority of Makily's sleeping time is spent in Stage 2. While the majority really should be in REM. In fact only 4.2 percent of the time she was asleep was spent in REM sleep. That is when your body is getting the most rest and Makily's body isnt getting to REM sleep and staying there....why you ask?
Makily had 16 obstructive apnea episodes and 2 central apnea episodes (central meaning her brain is not reminding her to breathe....much like in some newborns). She desats down to 87 percent, wakes up and breathes. They feel the obstruction is caused by her tonsils and adenoids (T&A). I asked if there was a way to tell if the obstruction truly IS from her T&A or if it is from her laryngotrachealmalacia (means her larynx & trachea are soft...when she takes a breath in they both collapse like a straw and this does cause an obstruction to a degree...she has had this since birth). They did not realize she had laryngotrachealmalacia (you think i'm smart now...is that a long freaking word or what). The nurse practitioner said that they could do a bronchoscopy/laryngoscopy at Florida Hospital Waterman to look at her T&A, and her entire airway to determine what is causing the sleep obstruction. I asked if they had a pediatric anestesiologist there and she said "Well they have an anestisiologist that does pediatrics"....which to me means NO. I said NO thank you. Makily IS NOT your average kid IN ANY WAY and I am NOT comfortable anywhere but in a PEDIATRIC HOSPITAL with her. She's too tough of a case to let just anyone poke around in her throat ya know?!?! When the doctor came in his advice was to go back to see Makily's ENT, Dr. Mosier and take the report to him. Then he can schedule to scope Makily in the OR at APH Childrens....if after scoping her he feels that it truly is her T&A causing the obstruction then he will go ahead and remove them at that time. If he feels it's the larynx and trachea he will do nothing. Those will harden and get stronger as Makily grows and there isnt much that can be done for it. I am not sure what they will want to do as far as treatment for the apnea if it is the laryngotrachealmalacia. She WILL NOT tolerate a C-PAP.

Therapy is going SO WELL! She is standing longer and longer each session and last session we did NOT have to use her leg splints at all. She even did 3 "squats" on her own without being forced! She is bouncing more and more in her Jumperoo these days also. I really believe all this progress has alot to do with her NeuroSuit. That and all the prayers she has going up for her.
She also has said "aaaaaaaaannnaaaaaaaaaaaaa" and "aaaabaaaaa" a few times. I know you are laughing but she has not been saying ANY consonate sounds at all so this is progress. I've gotten a few "aaamaaaa"'s out of her too.

That's all for now. I will update again soon. I am adding new pics and a video of Makily tonight. I hope you enjoy watching.

Her appt w/the ENT is 12-12-06.

Please sign the guest book if you have a chance!

Monday, November 6, 2006 6:29 PM eastern

Tomorrow morning Makily, her G.G. and I are heading to Orlando for more appointments. She is having a swallow study tommorrow at APH (gouge my eyes out with a spoon please) and then on Wednesday she has a follow-up with the pulmonologist who reviewed her sleep study...oh joy...oh bliss. The swallow study I AM worried about. Makily's swallowing is delayed (always has been) and so I know they will comment on that. Also Makily's eating routine is VERY SENSITIVE so the fact that we will be in a room with 2 people she does not know, in a weird chair and being forced to eat baby food with radioactive stuff in it makes me worry. I don't know that she is going to do her best for them so PLEASE pray that even if she doesnt do her best for these people that she WILL NOT ASPIRATE ANYTHING. That is my biggest concern. She had a good swallow study right before we left the death hospital...errr uhmmmm I mean Shands...haha. Anyway the new gastro wants to see for himself so we are doing it really to appease him and ensure she is still NOT aspirating oral feeds. My biggest worry is that they will say she aspirated something and that I can no longer try to orally feed her....I swear I will loose it big time then. I *believe* they will also be looking for reflux and gut malrotation at this appointment. I am not concerned about the reflux because she has the Nissen surgery for that. I in fact have a VERY mild form of gut malrotation so I am a little worried they may find something with Makily. Her gastrointestinal system is SO TERRIBLY sensitive and has always been so at this point NOTHING surprises me.

Wednesday the pulmonologist will just review her sleep study with me and give me the detailed results. I know it was abnormal and she had 6 desaturations per hour while she slept but I don't know how mild or severe this is.

Since it's 2 appointments 2 days in a row we are staying overnight. I will update when I can. Please pray that all goes well and that we don't end up coming home with more equipment than what we went with.

Friday, November 3, 2006 1:51PM

Sorry I havent done a good update in a bit.

This week FLEW by!

We had a few rough days with Makily Wed night and Thursday her G tube was leaking REALLY BAD. I had a onesie on her and she had picked at her g tube site so much she made it bleed. ALL DAY yesterday she was fussy and if she was awake she was crying and trying to get to her G tube so she could scratch it. The area was getting pretty red and I was getting a bit panicked. I couldnt figure out why she was so miserable and why it was so leaky. The more I covered her G tube and made it where she couldnt get to it the madder she got. She would be HYSTERICAL either because she couldnt get to the G tube to scratch it OR because she had managed to get to it and scratched too hard and made it bleed. AHHHH!!! Last night about 6pm she had a big ole poopy and it dawned on me that she hadnt pooped that morning. After that poop she started talking and being herself again so I guess when she is constipated her tummy leaks. We give her prune juice with her formula at night and usually it works...I guess it didnt yesterday. Today she is much better and it isnt leaking. THANK YOU GOD!
I went ahead and took her to therapy on Thursday morning just to get there and discover she had leaked GREEN bile through her outfit and fallen asleep on the way there. I went in anyway and Jenny and I talked. She did stretches with Makily while she slept. I ended up crying like a big ole baby talking to Jenny about the G tube. I HATE THIS THING! I mean it's bad enough she has to have the thing but can it just work and not cause her MORE pain? I don't think I am asking too much here. I told Jenny that if Makily could JUST EAT that we could get rid of the dang tube and not deal with this at all. That's when I lost it. I just starting crying and couldnt stop. I felt so bad but Jenny was SO AWESOME. She hugged me and actually cried with me and told me it was okay. She reminded me of all the wonderful things Makily IS DOING and all the "lightbulbs" that have been turned on in her brain the past 6 months. I told her she was right and that I cannott give up hope that one day her "eating lightbulb" will finally switch on and it won't be such a struggle anymore. The truth is she IS doing better with eating, but I am human and I want her eat by mouth completely AND NOW. She will get there. I know it.

We had a great Halloween. Makily as you can see was Tinkerbell. She went Trick or Treating with her cousins Micah and Delaney at the mall. She zonked out at the end of the night! It was a great night!

Monday, October 30, 2006 1120 PM

Don't have alot of time tonight for a big update but I did want to add some Halloween greetings and a few pics of Makily in her costume. Makily's Granny Julie and I made her costume....isnt she the cutest TINKERBELL ever?



Pumpkin Patch:





More pics and updates coming after Halloween. EVERYONE HAVE FUN AND BE SAFE!

HAPPY HALLOWEEN

Wednesday, October 18, 2006 1:30 pm eastern

LOTS OF UPDATES TODAY.

I'll start with the good news.....who I am kidding I WILL START WITH THE WONDERFUL NEWS!

On Saturday Allen, myself, Makily, my parents and sister Elizabeth went to the golf tournament for FORE THE CHILDREN. This particular tournament was sponsored by Kimmins construction. Makily is featured on their site:
http://www.kimmins.com/golf2006.html
All proceeds though went straight to FORE THE CHIDLREN. Awesome huh? We were excited to be able to meet Mark and Dana (the owners of Fore The Children) and I was also going to get to see my friend Holly who referred our family to them. Unfortunatley Holly had to go out of town and we missed her.

We met another AWESOME family. The Tuckers, their son Zachary passed away in May from cancer. They are an amazing family and realize that Zachary's life has touched so many including ours. Their strong faith in God is very obvious and I know that is one of the things that has gotten them through the last year. Fore the Children has helped them out also.

I had made a "collage" for Mark and Dana and framed it. They loved it and set it up at the display table at the lunch for the tournament. Here it is:



Right before the "program" portion of the lunch Mark asked me if I would be comfortable saying a few words and sharing how we came into contact with FORE THE CHILDREN I said "sure no problem"! As soon as he walked away I got soo nervous. I had nothing prepared and those that know me know I tend to ramble on and on. This was a room FULL of golfers mostly men and my other fear was that I would get up there and start bawling in front of them all and not be able to compose myself. I figured I better suck it up though! I can do this! I went up and told our story. I did have the "I'm fighting tears" voice through the whole thing and my hands shook but I got through it and I am so proud and happy I did. I tried to look at my mom and sister a few times for stength but both of them were crying themselves.....THEY WERE NO HELP! They are just as wimpy as I am!

When I finished talking they all applauded me. Then Mark asked me about the NeuroSuit conference we had gone too. I thought this was odd but I explained what the suit was and how Makily stood up for the first time in it to the audience. Mark said "Well ya know what? We have the suit right here for Makily, we bought it for her". Dana came up and handed me the suit. I couldnt believe it. They paid for my training in August AND for the suit. We have been saving for this suit since August and hoped to buy it in January. Now that money will go towards other things Makily needs. I AM SO GRATEFUL!

I CANNOTT BELIEVE WE HAVE MAKILY'S SUIT AND FORE THE CHILDREN BOUGHT IT FOR HER. I AM STILL STUNNED AND AMAZED. As soon as they handed it to me I hugged Mark and cried. The audience just applauded. It was an amazing moment that I will NEVER forget.

We started using it in therapy yesterday and Makily does so well with this suit. She does AWESOME STANDING with it on and stood for 10 minutes with no break yesterday.....Here is a picture!


THANK YOU AGAIN TO KIMMINS CONSTRUCTION for hosting this tournament AND TO FORE THE CHILDREN FOR ALL YOU DO. Every single penny that is raised by FORE THE CHILDREN goes DIRECTLY to the families. There are ZERO administrative costs and that is rare. Mark and Dana when you get to heaven your crowns will be very heavy and full of jewels. You are incredible people and I am so glad to know you.

On to the not so great news. I called to find out about Makily's sleep study today. The nurse asked if anyone had called me and I said no. She said we needed a follow up. I then asked about Makily's results and then she asked if we had recieved them in the mail. I told her no.
This is what she explained to me. Remember I am not a doctor but this is what I understand from what she told me.

1. Makily falls asleep but does not stay in deep sleep very long.

2. She takes too long to fall asleep (30 minutes....I thought that was good but what do I know?)

3. Makily desats to 87 percent. She does this 6 times an hour while she sleeps.

So basically when Makily is sleeping it takes her too long to fall asleep. When she does get into deep sleep she relaxes too much and doesnt breathe as well and desats to 87 percent. Then her brain reminds her to breathe which in turn wakes her up to a point and so she isnt getting the deep REM sleep she needs long enough. This is a cycle the entire time she sleeps. I have a followup with the pulmonolgist Noveber 8th. I will let you know what they think.


Please continue to pray for Payten's family. Bonnita you are never far from my thoughts.

THANKS AGAIN TO KIMMINS and FORE THE CHILDREN for everything you have done for us!
WE LOVE YOU!
www.forethechildren.com

Thursday, October 12, 2006 9:46 AM eastern

Yesterday was a very sad day.

I recieved an email from Stephanie the chromosome 22 group owner.

Monday Payten Vanderklooster passed away suddenly at home. We were fortunate to have been able to meet Payten and her family at the conference in July. Payten was 3 1/2 months younger than Makily. Payten, Makily and another little girl Ava are all around the same age and everyone kept saying how much they resemble each other and they could have been sisters.

I spoke with Payten's mommy Bonnita yesterday and she is beside herself but handling this loss as well as can be expected. Bonnita, please continue to take comfort knowing that Peyton is running, dancing, talking and singing like she never was able to do here on earth. You were and still are an amazing mother to her and did everything you knew to do to make her life as happy and normal as possible. Her body may have been weak but her spirit was strong and that is partially because of the love your family showed to her. I know she is looking down on you, her Daddy and big sister thankful that she was yours.

Please pray for Payten's family as they adjust to life without her.

Online condolences can be offered at
http://www.longworthfuneralhome.com/runtime.php?SiteId=-1010&NavigatorId=-64930


Sleep peacefully sweet Payten, you are missed little one.

Sunday, October 8, 2006 10:30 PM EASTERN

Makily has a chest cold. She has been "raspy" for a while now but woke up Thursday morning coughing so hard she was gagging and retching. I took her in to Dr. Pierre's office and saw Dr. Seva. She said Makily was wheezing so we started her on breathing treatments, DuoNeb and Xopenex alternating every 4 hours. Then we do chest PT to help her get it up. Her right ear tube is totally clogged and the left ear has some fluid in there. Her sinuses sound really swollen to me too. They gave me Zyrtec to give her at night and it is helping. She is still in pretty good spirits though.

Her EEG results from Tuesday came back normal! HOOOOORAY! We are still awaiting the results from the sleep study. I called Friday and the Neuro still didnt have the report. I am assuming it can't be that bad if it's been a week and they havent gotten the report yet. Keeping my fingers crossed.

The "home" picture I have up is from the morning after her sleep study. Her hair was SO WILD and CRAZY! I couldnt help but snap a picture of it!

This picture was taken about a week ago. I just think she is so darn cute.

Tuesday, October 3, 2006 9:40 PM CDT

We've had a busy few days!

On Saturday Allen and I took Makily to Sea World. We have season passes THANKS TO AUNT COUSIN TARA so it was FREE. We got a "guest assistance pass" for Makily's kidkart and got front row seats and STAR treatment. It was great! We took her to see a sort of "under the sea circus" show there. We started out sitting in the back and a VERY NICE lady that worked there urged us to take Makily to the very front row in the "reserved" section. SHE LOVED EVERY MINUTE OF IT. Makily kept looking at Allen and at me smiling and laughing. She would kick her little legs out and "talk" when she really liked something. It brought tears to my eyes to see how happy she was and how much fun she was having. She ended up falling asleep after all the excitement of the show but it was worth the trip just to watch her eyes light up from all the action on stage. I will never forget how happy that show made her.

Sunday night was her sleep study. We had a little trouble getting in to the building. We finally did manage to get in and they hooked Makily up. While this was not something she enjoyed she did MUCH better than I expected. She had electrodes and belts from the top of her head to her toes. Once everything was in place they laid her down in a regular twin bed. She sleeps in a bouncy most of the time here at home so I wasnt too sure how she would do. The tech put up the "toddler rail" and she was fine. She watched her DVD until about 10:30 and the tech told me that in about 30 minutes he wanted it turned off and for her to fall asleep. Again I was nervous because Makily has NEVER gone to sleep without her DVD going. I closed the DVD player but left the sound on. She wiggled AND grunted for a while....just as she was drifting off the tech came back in because Makily had ripped a wire off. This woke her up and we went through the wiggle, grunt, pull off lead, drift off to sleep, replace lead WAKE UP MAD cycle twice before she finally gave in and slept.
At 5am he came in to take all the wires and belts off her. She slept from 11-5am in a big girl bed WITH NO TV ON. I can't believe it. I am so proud of her. While he was taking off all the leads he asked if Makily had her tonsils. I said she did and he said "well they may want to remove those". *sigh* He didnt really say much more reguarding the results so I am really trying NOT to jump to conclusions and wait for the full report.
Today Makily had her EEG at the neuro office. She did well with getting the leads on her head because they bribed her with a Cinderella DVD. When we turned it off to start the test she decided she wasnt cooperating. We tried several different things to calm her but she was mad. The leads kept coming off because she was having such a tantrum. FINALLY we got her calmed down and they did the "strobe light test" which made her scream her head off all over again. When that part was over we let her see about 5 minutes of Cinderella to calm her and then turned it off to get her to sleep for us....which she did. The tech didnt give us any kind of results but we will be getting a full report on the EEG and the sleep study at Makily's follow-up in 3 weeks. I will keep you posted.

Wednesday, September 27, 2006 8:50 AM CDT

Lots of stuff coming up in the next week or so.

Makily's sleep study will be THIS SUNDAY night through Monday morning. I was surprised how quickly they were able to get us in. We have to be at the sleep center at 7pm and will be there until Monday morning around 5am.

Then on Tuesday (10-3) she is having her EEG done at the Neuro's office.

Friday (10-6) she will be having a swallow study at Arnold Palmer Childrens Hospital.

All of these tests will be very stressfull on Makily. The sleep study requires all kinds of wires and stuff attached to her body AND HER HEAD. I don't know how we are going to get through it because SHE HATES ANYTHING ON HER HEAD. Hopefully she will just be tired and will go right to sleep.

The last EEG she had that she was awake for she screamed through most of it.

I won't even talk about the swallow study.....she is going to be VERY ANGRY through the whole thing, I don't even want to think about it.

Her sleeping has actually improved EVEN MORE since I posted last week. I totalled up yesterday and she slept about 15 hours total. This is better than what it was before but we are still going to go ahead with the sleep study just to be on the safe side. Plus Makily is unpredictable, the last several days could have just been good ones. I am hoping her body has finally just adjusted to the meds. We will see.

Friday, September 22, 2006 9:26 PM CDT

Lots of things to update on today.

First off as I have mentioned before Makily has always been a sleepy kid. Her thyroid levels have been abnormal twice in the past. Both times she was sickly when the blood was drawn, and the levels were off but not terribly off. We decided that as long as Makily was not showing symptoms of a thyroid problem we would put that on the back burner (we've had so much other stuff to take care of as far as her health is concerned).

So we had Makily's blood drawn 2 weeks ago to test her thyroid levels. She also got a flu shot the same day. SHE WAS AMAZING FOR HER BLOOD DRAW AND FLU SHOT! I was incredibly proud. She didnt fight Dr. Pierre at all OR CRY!! She winced a couple of times but otherwise looked around and up at me several times. I told her it was okay and she remained still and quiet until it was over. SHE HAS NEVER been this good for any blood draw. She cried after the flu shot but stopped AS SOON as I picked her up. She is such a strong, big girl.

Her Thyroid results came back normal. Which is good but still doesnt explain why she has always been such a sleepy kid. I had a neuro followup scheduled for today so I just figured I would bring it up to them at today's appointment.

I had already discussed with Dr. Pierre the issue of the seizure medication. While it does add to Makily's drowsiness it has gotten a little better recently. Since the sleepiness has ALWAYS been an issue I know that is not the culprit. Dr. Pierre said most likely they wouldnt change her med but want to wean her to a lower dose. I really do not feel comfortable with changing the med or weaning right now for several reasons, one of which is because while weaning she is at higher risk of seizures and I am aware that ALL seizure meds do have a side effect of increased sleepiness. I don't see the point in making her body adjust to going off one med to try another that has the same effect on her.

SO, we discussed all of this with the Neurologist today. I have to say they are some of the nicest doctors! They explained that the sleeping could be a result of a few things:

1. It could be a certain form of seizure that is unable to detect by just looking at her....she does have short staring spells (which could be nothing...or of course something). If she is having those types of seizures they would cause extreme fatigue afterwards which explains the sleeping. If this is the case they would want to increase her meds.

2. She could have some type of sleeping disorder like Narcolepsy. I know, you are thinking of someone falling asleep while walking down the street right? Narcolepsy has a very wide spectrum so she could have a form of that. Makily is having an EEG again to see if she has a sleeping disorder

3. Makily could have obstructive or a central sleep apnea. Obstructive apnea would be caused by her tongue falling into her airway (her tongue is already far back in her mouth due to her PRS) and is always pointed UP. She also has laryngotrachealmalacia (basically her trachea and larynx cave in like a straw when she takes a breath in). So the combination of just those 2 problems make if very possible that she is not getting adequate oxygen when she is sleeping. If this is the case Makily is sleeping alot but not really getting true rest. She does snore too.
Central sleep apnea is caused by irregularities in the brain’s normal signals to breathe. Given Makily's brain abnormalities it is a very strong possibility she has one or both of these problems. *If I had to guess I would say that this is what is cauing her sleepiness* Makily is having a sleep study within the next month.

4. Rett Syndrome. I DO NOT BELIEVE MAKILY HAS THIS but the doctor did say it was a possibility. It is a neurodevelopmental disorder and it is caused by a mutation on the X chromosome. I have read up on it a little and Makily does has all of the symptoms of it...BUT Rett Syndrome mirrors Emanuel Syndrome in MANY ways. Usually Rett syndrome kids develop normally until they are 6 months old and then start to decline after that. Makily has never developed "normally". I just think it would be incredibly bad luck to have Emanuel Syndrome AND Rett's.
Nothing surprises me anymore though! The doctor said after all the other testing is done, if we still don't have an answer then she will do another chromsome analysis looking specifically for Rett's and possibly other genetic causes. I told her that when I met all the other 11/22 kids in Canada that none of them had the sleeping issue like Makily.

I will update again after her next appointments and test results. Maybe sooner if anything else happens.

Monday September 11, 2006 at 12:36 pm

I had tried to give this information last week but I had technical issues so I decided to wait until that was resolved to announce that

OUR NON-PROFIT ORGANIZATION IS READY!!

The name of our organization is "The Future's So Bright". I spoke with our attorney last week and he explained that we can start fundraising! We do not have our paper work back from the IRS yet so at this point we arent tax exempt or deductible. Soon though!

Our logo is being made by Lindy with www.bragbiz.com....FOR FREE! She was so kind in offering her services and we are so grateful she is doing this for us! Her designs are SOOOO CUTE! THANKS AGAIN LINDY!

So you are probably wondering what our organization plans on doing? Here are our initial goals.

1. Start support group in Ocala for ALL special needs children and families to meet once a month.

2. Establish an "equipment bank". (This will be equipment that others have grown out of or can no longer use anymore.....when other children are in need or are awaiting their insurance companies to pay and process their claims we will be able to let children borrow equipment. Makily's Kid Kart took 9 months to get...in the mean time she was in a stroller without the proper support....she has a 7 urvature of the spine now.

3. Develop a list of assistance and services for special needs children. I have yet to find any state organization that gives this information out freely. Alot of times incorrect information is given and kids go without services they need because the parents do not know where to turn. We hope to be able to provide a list of every service available to special needs children.

4. Once we get some funds raised we hope to be able to send some families on a vacation or even just to have a night out or do something fun with their kids. We do not plan on limiting ourselves in what we will help out with financially. Sometimes just regular bills can start to be strained. One aspect of parenting a special needs child is that usually one parent is forced to quit their job to care for the child. (I personally have not been able to work since having Makily) So on top of being minus one income you also have a child that needs expensive equipment and services. "Extras" like vacations and fun time have to be put on the back burner in order to provide for the child. If anyone needs some FUN time, it's these families.

We are also hoping to eventually be able to buy NeuroSuits for some kids. Carrie and I believe these suits are so beneficial to maximizes each child's potential.

If you would like to make a donation to The Future's So Bright via paypal, credit or check card please click on the button above this jounral entry that says "Make Donation".

If you would like to make a donation via check or money order please send it to:

The Future's So Bright
Trish Caldwell or Carrie Hammer
3628 NE 28 Terrace
Ocala, Florida 34479

ALL DONATIONS will be going to help Makily, Brennan (www.caringbridge.org/visit/brennanhammer) and other kids like them in the Ocala and surrounding areas.

We are in the process of applying for a booth at Light Up Ocala this year to raise funds. We are going to be selling sweet treats.

Thank you for suppporting our new endeavor. We are so excited and can't wait to start helping others.

Trish Caldwell
Proud Mommy to Makily
Co-Director
The Future's So Bright
(that felt really good to type! ;-)

Tuesday, September 5, 2006 11:24 PM

All is well here. Makily got her stander and bath chair last week. The stander is OH SO CUTE AND TINY! She HATES it but I am hoping she will get used to it. She doesnt like her creepster either but I see improvements after each time she goes in it. She is adjusting to the bath chair. All this time she has been in her tiny infant tub and now she is in the BIG tub in her bath chair so it's different for her. I sing songs and play games while she is in there and she likes that.

She excells in speech EVERY week. She ate some Gerber Graduate green beans for Elon along with some other different textured things. We are working on people food more now rather than baby foods. I have found a new sippy that seems to work best with her as far as drinking goes. She hates the bottle/nipple in her mouth so I have all but given up on the bottle. I am a little sad but whatever it takes to get her drinking I will do. Elon confirmed a fear of mine last week at our session. Makily has a pretty bad under/over bite!??! Does that make sense!?!? Her bottem teeth are out farther then her top. USUALLY pierre robin kids has an extreme overbite caused by the delayed formation of the mandible. No not my kid...she even has to be abnormally abnormal. So on top of having to learn to eat she has to compensate for the fact that she had her cleft OPEN until she was 18 months old, pierre robin sequence, a severe underbite, low muscle tone in her mouth and suck,swallow breathe difficulties. GREEEEEEAT! She SURE tries hard though and so we keep plugging along.

PT and OT are kinda scattered right now. She has been sleeping so sporadically throughout the day it's hard to pick a time to do them. We tried mornings, she would be asleep or fall asleep when I got there. Now we are moved to afternoons and she is falling asleep then. *SIGH* I have a call in to neuro to see if it's the seizure med (I think it is). I have an appt for next week at 11 am for OT so hopefully she will be awake during that time.

Carrie and I are STILL working on the non-profit organization. It's called "The Future's So Bright". We are collecting information on what to do in order to have a booth set up at Light Up Ocala this year. We are planning on selling sweet treats to raise funds. We are still waiting on the paper work from the attorney giving us the go ahead so I am getting anxious. I want to get the ball rolling! More updates on this to come.

Saturday, August 26, 2006 9:12PM

I HAVE EXCITING NEWS!!!

This weekend was the parent training and informational session for The NeuroSuit. Since I helped set it up they trained me in the use of the suit for free. We even got to put a suit on Makily!!!

****SHE STOOD UP FOR THE FIRST TIME IN HER LIFE IN IT!!!****

I am amazed....she was in the suit a whopping 5 minutes and we got her on her FEET! I have gotten her up on her feet before but as soon as you let her hands go she basically would bend right in half.

**Makily getting used to the suit**


She could not hold her upper half up, she lacked the muscle tone and strength to do so. The NeuroSuit creator Trish(yes her name is Trish also!) suggested I "let Makily go." I told her that she couldnt do it because we had tried before and she always fell over forward. She told me to use a few subtle cues with Makily and then just "let go". So I did and she started to fall forward.....and then MY BABY GIRL DID THE MOST AMAZING THING.......SHE CAUGHT HERSELF AND STOOD UP!!!!!!!!!!!!!!! I have tears in my eyes just typing it. Here is a picture, right after she "caught herself" look at my hands, I am such a nerd, it was all I could do not to grab her!:



I am even more convinced on this NeuroSuit and Intensive Therapy now. The suit Makily had on was did not fit her either and was actually TOO BIG BUT she still benefitted from it! I talked it over with Trish (the creator) and she said when we order the suit they can alter the smallest size down to fit Makily, and so when Makily does grow we can take out the "alteration". The suit is made to grow with your child and given the fact that they are going to alter one down for her means this suit will last her SOOOO LONG!! I would say AT LEAST until she is about 6 years old...maybe longer. The suit is $1900 and Allen and I are going to start putting money back and are going to buy her one. I believe it is well worth the money!

Oh yeah and she stood up NOT ONLY ONCE.......but TWICE! We caught the second time on tape.....she wasnt as strong the second time (she is crying too) but she still did it.


Here's the video (by the way my poking her are "cues" for her to push back so she doesnt fall, I am not just being mean ;-):

I am so proud of this kid, I could just burst. She actually did it longer than in this video but we only caught her near the end.

I love this picture. After Makily stood up, I was very obviously crying. When you are told to expect your child to do NOTHING seeing them do something like stand up when THEY NEVER have before is VERY EXCITING AND EMOTIONAL. This is Me, Makily and Trish......she was crying too. She obviously loves her job....she does it well.


If anyone wants more info on this suit go to www.neurosuit.com

Sunday, August 20, 2006 11:21 PM CDT

Lots of stuff to say!

First of all I have mentioned a few times that my friend Carrie and I have been working on starting a Non-Profit organization for special needs children and families in the Ocala area. We have gotten an attorney to go over all our paperwork. We are just awaiting our paperwork to come back giving us the "go ahead".

In the meantime we have been working on bringing a new kind of therapy into Ocala. Carrie has been taking her son Brennan (www.caringbridge.org/visit/brennanhammer) to an intense therapy camp every summer in Georgia. This camp utilizes what's called NeuroSuit therapy. It has been around for a while but was basically just in Poland. Recently it was introduced in the United States. It's fairly new here. Some representatives from NeuroSuit have agreed to come and give a free informational session on the suit!!! WE ARE SO EXCITED! I know it's short notice but we had a little bit of a rough time getting all the details ironed out. Here is the flyer we have going out on the informational session.



If you know anyone in Florida that could benefit from this type of therapy PLEASE PASS MAKILY'S SITE ADDRESS ON TO THEM or just have them visit www.neurosuit.com. It's an easy address to remember. We are hoping that this will help many special needs children AND ADULTS alike.

As you can see from the flyer they will also be selling the suit and doing parent/therapist training while they are here too. You can contact them for prices and information on the suit and training. Their number is on the flyer.

Allen and I plan on eventually buying the suit. Families with NICA can get the suit fairly easily I am told. I will be trained in the suit therapy while they are here since I have helped to put this all together. I am very excited!!!

If anyone has questions as far as how to get to the HILTON or needs any other information that I can help with please feel free to email me. If it is something more involved I can call you, just email your number to me. Of course I do not know EVERYTHING so if it's something technical about the suit itself please contact the www.neurosuit.com OR CALL THEM at their 800 number from the flyer.

Wednesday, August 16, 2006 10:40 AM

Well lots of exciting things happening around here!

First off we went to Orlando Sunday. It was such a nice short trip and Makily swam in the pool at the hotel. Here are a few pictures!

Mommy and Makily


Makily and Daddy


As you can see in the first picture she slept when we first put her in and then she woke up after a while and giggled and laughed with her Daddy. It was alot of fun.

Here is Cameron and Makily warming up after swimming:


Makily in her kid kart at Joe's Crab Shack....she is intently watching "Little Einstein's" on the DVD player!


What is REALLY EXCITING is that when we came home on Monday afternoon, we had a HUGE box at our doorstep. At first we got upset because we thought it was a box of chux pads......let me explain! We ordered 30 chux pads from our home health company and they sent us a CASE of them. 300 chux pads!!! We just ended up keeping them and I was worried that they sent us ANOTHER case accidentally. We were trying to figure out where we would put them as we walked up to the door. I picked up the box and knew it was not chux pads. I opened it and couldnt believe my eyes. It was a creepster crawler. I have wanted one for Makily FOR A LONG TIME. She hates to be on her tummy and it's hard for me to hold her there indefinitly. Here is a link for those of you that do not know what it is:

http://www.flaghouse.com/itemdy00.asp?T1=36887

There was no card or tag. I had no idea who sent it. It was just addressed to Makily. So a few hours later I got a call from Dana with FORE THE CHILDREN. She was calling to make sure we had gotten it. FORE THE CHILDREN DID THIS FOR MAKILY. I cannott get over how amazing these people are. They had "heard" we wanted one from someone else and so they just bought it and shipped it to us. Dana was so very sweet and I am just in awe of how giving and generous they have been with our family. We have struggled so much in the past two years and so getting help like this is almost unbelievable. Again if anyone is wanting to make a donation or contributions to them PLEASE VISIT THEIR SITE:

www.forethechildren.com

There will be a golf tournament in October in the Tampa area. ALL PROCEEDS will go to FORE THE CHILDREN. If you are a golfer please sign up now! Here is a link to the tournament information....Makily is featured on this page too! COOL HUH?

http://www.kimmins.com/golf2006.html


THANK YOU AGAIN FORE THE CHILDREN.....YOU ARE AMAZING PEOPLE WITH AN AMAZING FAMILY. WE LOVE YOU! Holly I also want to thank you AGAIN for referring us to them. We have benefitted so much from this! THANK YOU!

I put Makily in the creepster twice yesterday. She cried both times but I noticed after each time I could already see a difference in her upper body. I believe this will help Makily finally gain the strength she needs in her little arms and hopefully she will learn to crawl. Right now we are just trying to get her used to being in it. I am so happy that we have it.

That's all for now. Thanks for following along....sign the guestbook if you have time!

Tuesday, August 9, 2006 12:17 AM

SORRY it's been a while since I updated. We have finally settled in here at home and are getting back into our old routine.

I can't say enough about the conference. It truly was an experience, birthday and weekend I will never forget. Everyone was so wonderful and welcoming. I honestly felt like I had known them all for years. I will never be able to thank FORE THE CHILDREN for their genorosity in making this trip possible for us.

**Making friends! Natrice, Makily and Mommy.**


I have alot of renewed hope and faith. Seeing so many of the children happy and thriving brought tears to my eyes so many times. Knowing all that they have been through and seeing smiles on their faces brought me so much joy.

As for every day life things are going well. Makily is excelling daily in eating orally and she is so vocal all the time. She is cooing and making all kinds of noises. It's the cutest thing ever.

Yesterday me and her Daddy set her pool up in the back yard and Makily and I played, while Daddy mowed the TALL GRASS in our backyard!
She likes it when I make the water splash with her hand. She laughs so hard.
**This is fun Mommy!**


I started notice after about 30 minutes that she was getting the "shakes" and her lips were getting kinda pale/bluish. We brought her in and warmed her right up.

**warming up after playing in the pool**

She did this in the pool in the hotel in Canada too. I think she has problems regulating her body temperature. She has always been too cold or too hot when she is in the hospital. When it's hot she gets SUPER HOT....when it's cold...she gets too cold. This Florida sun is KILLER right now. I kid you not when we got in the Truck the other day the temp gauge said 108 degrees. Makily did get a little sick last week from being in the car and it being so hot. I knew she was hot when I got her out of the car but we got inside and she started RETCHING so hard. I hate it when she tries to puke. We stripped her naked and wiped her with cold, wet washcloths and she was the HAPPIEST KID after that. I keep the a/c on full blast when we are in the car but she still gets so hot her cheeks turn red. I am looking for a clip on battery operated fan that I can clip on her carseat that will blow directly on her. I am only finding the ones that hang around your neck and that is not going to work. If anyone knows where I can find a clip on battery fan LET ME KNOW!

On a positive note Makily is doing GREAT with the new formula now. I talked in length with the nutritionist and she gave me a new weaning schedule and IT IS WORKING GREAT! I can't wait to get her off the Alimentum completely now. I am not constantly worrying about how much food I have crammed into Makily's tummy now. The new formula has more calories so I don't have to fill Makily up so full. Her tummy empties so slow and so it is a constant battle with getting enough calories in BUT not getting her too full either. Since the new formula has higher calories Makily does not need to eat as much.

She is now totally off the Dilantin and just taking Topomax 25 mg twice a day to prevent seizures. I did get a little worried because I was seeing it in her poop....I know......let me explain. The Topomax comes in capsules. I have to break them open and put the little "beads" from the capsules in water and then put that through the G tube. (this is a pain in the rear by the way as the "beads" like to clog in the tube or stick to the sides of the tube). ANYWAY I was noticing that the beads were in her poop EXACTLY the same way they went in....tiny white beads...I don't think her body was absorbing it. I called neuro and we played phone tag for 2 days. Then I stopped noticing the beads so I am holding my breath and hoping that her body has started to absorb the meds again. Pray that is the case because I really do not want to play around with seizure meds. It makes me nervous.

Carrie and I are still working on getting the support group started in Ocala. Things are moving along with it and we are really getting excited about how it's all falling into place. We have an attorney who is willing to help us out pro bono so that is so exciting! I will update more on this as things progress.

That's all for now. Thanks for following along. Keep us in your prayers.

Who looks cuter in pig tails? NO ONE!!!

Wednesday, July 26, 2006 4:04 PM

Please forgive me that I am just now updating again! I just got home last night and I am so tired I don't know who I am!

The trip was AMAZING! I cannott believe how great all the kids were. The parents were equally wonderful and I felt like I belonged....for the first time in almost 2 years I belonged somewhere. It was emotional for me.

The flight went well, Makily LOVES flying and giggled and laughed the first 30 minutes and then zonked out. I on the other hand did not enjoy take off and REALLY hated landing but I survived.

The airport was such a whirlwind and by the time we got through with our bags and all our carry on Elizabeth and I were both sweating! WHAT A WORKOUT that was!

As soon as we got to the hotel my stomach did flips. I was so nervous about how it was going to go, what I would see and how I would handle it all. The "meet and greet" time was at 7pm and we went down to the conference room. Everyone was so welcoming and excited to meet Miss Makily. I felt uneasy for about hmmmmmm say 30 minutes and after that I was FINE. Meeting the other kids was amazing and I am so thrilled to see that so many of them are walking...whether it be with assistance or independantly they are doing it.

I made some awesome connections with several of the families. There were so many people there and I wish I could have spent more time with everyone. It went by so fast. I do want to mention a few people that really touched me.

Stephanie, Martin, Maia Jaida and Natrice, you guys are as awesome as I imagined you would be. Your love for one another shines through and I am so proud to know you all. Maia stole my heart from the day I first saw her picture on the c22 site so meeting her in person really touched me. I loved watching her talk to Treelo and getting so excited at the roller coaster coming and the fireworks at the falls. That is truly a birthday I WILL NEVER FORGET. Steph, thank you for just being you. We are so alike in many ways. I will never be able to express what it meant to me to have someone be upfront and honest with me in those early days when all I knew how to do is cry and wonder what had happened to my normal life. You are an inspiration to me. I love your family like you are all my own.



Michelle, Al, Jordan and SWEET Josh.....When I saw you guys walk in with the bumbo seat JUST FOR Makily I wanted to cry. You knew we couldnt have packed that. I will never forgive this gesture of kindness. Michelle, your strength astounds me, being told to "pull the plug" on Makily is one of my worst nightmares and so I have so much respect for you and Al for getting through that and NEVER giving up on Josh. He is a beautiful little boy and whenever I see a wrench now I will think of him. Tell Jordan that Makily misses him and that she can't wait to see him and get lots more KISSIES! Stay strong Michelle you are an amazing mother with an amazing family.




Laura, Damian and Daddy. Laura your story on the c22 site touches me everytime I read it. I felt so much of what you did in those early days and I too at times felt like I was "traveling to hell". I won't lie there are still days I feel that way but to know you survived, your son survived and is doing so well gives me strength and shows me to keep trying and to NEVER give up on Makily. I am so happy to have met you and your family. Your husband is so sweet and Damian is just an angel. I pray our paths will cross again one day soon.


The Clewes Family,
Lisa, I know I said it about 800 times but I will say it again. MADISON ASTOUNDS ME. I honestly could have sat and watched her for days with a HUGE grin on my face and tears in my eyes. She is such a joy and delight. I can't tell you what it did for me to see her coloring and playing with play doh. These are the things that I pray for Makily to do one day. To have fun, to play to enjoy life and so seeing little Maddie gave me more hope than I ever imagined I would have. Her ability to walk and communicate are so encouraging. I thank you for bringing her and showing me to NEVER GIVE UP, even when I feel like I can't take it anymore, to keep going, keep pushing Makily....because one day she WILL do these things. You are a wonderful mother..



I could write a book about all the kids and families but I don't have time today. I will try to post more pictures later and tell more about my trip. My phone has done nothing but ring since we got back and I am getting emails out the wazoo wondering where I am and BEGGING for an update so I figured I would give a quick one (yeah right this was so not quick hahahhahaa). More pictures to come.

Thursday, July 20, 2006 12:25 pM

Well guys tommorrow is the day I am leaving for Canada! I can't believe it's already here! Myself, Makily and my sister Elizabeth will be getting up super early in the morning and heading to Orlando at about 6AM. Our flight leaves at 9:30'ish. I am excited, nervous, scared and anxious all at once. Please pray that this will be a good trip. I know there will be times it may be hard on me emotionally and I just hope I will be able to get through those spots and enjoy things to the fullest. I can't believe I am meeting some of the people I have been corresponding with for over 2 years now. It will surely be an emotional moment when I meet another chromosome 22 kid and even moreso an Emanuel Syndrome kid...and their parents. To meet someone that KNOWS exactly where I have been, am going, and will be, most likely will bring me to tears. I am so very grateful to Fore the Children for the funding and my friend Holly for referring us to them. There surely are still good people in this world. God has blessed us by putting so many of them in our lives.

I am packing, packing and still packing, seems like Makily has more stuff then any 2 year old ever should! I am trying to decide what can be checked, what to carry on. I have never flown so this is all confusing to me! I am getting REALLY anxious about the flight and I hope that I do not freak out on the plane. I was talking to my sister about it yesterday and asked her "When a plane crashes do you think you can feel it or do you just die immediately?" She told me to shut up!! LOLOLOLOL I know it will be a safe flight but I am nervous. We are taking Dramamine along in the hopes that neither one of us will have to hurl into the puke bags. Wish us luck!

I promise to take tons of pictures and post them when we are able. My sister is bringing her laptop so if we can figure it all out we will post while in Canada.

See ya on the other side guys!!

Thursday, July 13, 2006 9:12 am

This week has been GREAT!

Myself, Makily, Carrie and her little girl Sarah went to Gainesville to get Makily "re-measured" for her kidcart on Tuesday. I AM PLEASED TO ANNOUNCE WE HAVE THE KIDCART.....THAT'S RIGHT WE HAVE THE KIDCART!!!!!!!

When we got there we saw all the new wheelchairs and equipment waiting for pickup. We noticed a pink framed kidcart and wondered if by chance it was Makily's. Sarah went over and looked at it and it had a tag on it that said "CALDWELL". When I realized it was there and that it was in fact Makily's I cried....and they honestly were not happy tears. I had another one of those moments of realization that my 2 year old needs a wheelchair. NEVER IN MY life did I ever think I would be in this position. A wave of guilt washed over me. I havent felt that feeling about Makily's problems in a long time and I hate it. I know deep down Makily's problems are not my fault but I feel so bad that my baby can't run and play. I just want so many things for her and it's still so hard to accept that Makily's life will not be what I want it to be for her. I am glad that Carrie and Sarah were there with me because Carrie TOTALLY understood and talked me through it. Then a few minutes later a mom with her older son that had CP came out. He was in his wheelchair and we joked around with him and his mom about the fact that he was trying to take the door with him! When they walked away I saw Carrie had tears in her eyes.....it was hard for her to see what the future may be like for Brennan. (www.caringbridge.com/visit/brennanhammer) Then we both cried again. WHAT A COUPLE OF BABIES WE ARE HUH!?!?!??! Thankfully Sarah was there and said something insane or did something crazy and made both of us laugh. I love that kid. **enough depressing stuff.**

They called us back and made adjustments for it to fit Makily PERFECTLY. She loved it and actually snored through the whole "fitting". They showed me how to break it down and put it together. It's easier than I had imagined and I figure I will be a whiz at it in no time. It does resemble a stroller so that makes it a littler easier on me.
**While I was there I asked what was going on with Makily's stander. The custom mobility guys told me to ask Dianne who was actually in there working. I asked her and she looked through Makily's paperwork and said "hmmm she did get measured for the stander at the same time as the kidcart....I wonder why custom mobility didnt submit this to me also"? I wonder the same thing but it doesnt really matter now. Dianne is the head of CMS and APPROVED THE STANDER RIGHT THEN AND THERE! THANK GOD! So that was ordered Tues!!! She asked me if I needed anything as far as bathing. I told her that we are still bathing Makily in an infant tub in the sink. She is getting too long for that. While she can sit up in her "duckie tub" in the BIG TUB she is still a bit wobbly. I am scared she may hit her head since she is slippery and I may not be able catch her in there. So she ordered Makily a really cool bath chair too!!! I will have this stuff in a month!!! I am so thankful to CMS for purchasing these items for Makily.....you have to understand that these items together cost over $6,000. Our insurance company did NOTHING but drag things out and deny paying for any of it. THANK YOU CMS!!!!!

Makily is having a rough time with the formula change. I had gotten her up to a total of 4 ounces of the new formula a day and she started retching and having diarrhea. I have a call into the nutritionist to find out what to do from here.

That's all for now. Please sign the guestbook if you have a minute!!

Sunday, July 9, 2006 7:22 PM

***Please say an extra hard prayer for Shelby Gagne and her family. Sweet Shelby won her battle with cancer this morning at 4:29am. She is now dancing with the angels, pain and cancer free. Sleep peacefully Princess Shelby you fought a brave fight little one.
Becca, Carol, Steve and Emi, you are in my constant thoughts and prayers.
******www.caringbridge.com/visit/shelbygagne******



Makily is doing well. The most exciting update is that she is taking the bottle again! The new formula (Nutren JR.) tastes much better and she actually tolerates it. I am encouraging bottle feeding 3-4 times a day with her. She is accepting the bottle in her mouth and will occasionally suck. We are using the cleft nurser with a preemie nipple and it's working well. I tried an regular infant nipple last night and it gagged her. The inside of her mouth is still very small. She is biting the nipple more than sucking right now. When she bites I squeeze the bottle to get more in her mouth and she is swallowing too so this is VERY promising. Makily does require me to sing "You are my Sunshine" to her while feeding. Usually when I stop she starts to get frustrated and "looses" her concentration on eating. Please pray that she continues to do better and better with bottle feeds. I actually am seeing TINY glimmers of a day without a G tube.....but I realize I am getting ahead of myself here.

Next week we are off to get Makily "re-measured" for her kidcart. CMS has agreed to pay for it since BLUE CROSS BLUE SHIELD OF ALABAMA won't. It's been 9 months since she was measured we have to do it again. If I don't get the kidcart soon I will just be taking Makily to Shriners in Tampa. I know they will provide her one free of charge. I shouldnt have to do that though when I have insurance. It makes me angry. Still no word on the stander and again, if I don't find out something this week I will be taking her to Shriners.

We are getting so very excited about our trip to Niagra Falls Canada. I can't believe we are going and I can't thank FORE THE CHILDREN enough. We are so blessed. We will be leaving on July 21st and returning July 24 to Florida. Most likely we will say overnight in Orlando since we will be getting in late on the 24th. My birthday is July 23rd and so this is such a wonderful birthday gift for me! There are so many families I have been corresponding with since I had Makily that I can't wait to meet. It will be so exciting and emotional at the same time. 2 more weeks!!!

Carrie (www.caringbridge.com/visit/brennanhammer) and I are working on getting a non-profit organization together for special needs kids and families. Ocala really doesnt have a support group or really anywhere to go and find out about various services that you would qualify for having a special needs child. In fact Carrie and I ARE STILL just now finding out about certain services and she has been a "special mommy" for 4 years. There needs to be an organization that can inform parents of all the different services and programs that are available to assist with the costs of equipment, therapies and all the other things that go along with having a special kid.

That's all for now. Thanks for keeping up with us.

Saturday, July 1, 2006 8:40 AM eastern

Well we made our trip to Gastro on Thursday. Myself, Makily, Carrie (Brennan's mommy www.caringbridge.com/visit/brennanhammer), and her little girl Sarah all went together. We got signed in and sat down and a few minutes later I saw a familiar face! Little Joseph (www.caringbridge.com/fl/joseph) and his mommy walked in. I recognized his face immediately! He is even cuter in person that online! We only got to chat briefly, I wanted to get pics of Makily and Joseph together but they called me back and we didnt get too. Hopefully we will run into each other again Elizabeth!!

Makily was 20 lbs at the appointment and they were very pleased with her weight gain. She is 31 1/4 inches long! WOW! She is getting so big! He went over her emptying study and assured me the tech was WRONG. Makily's tummy is a little slow BUT nothing like what the tech had originally told me. We are going to keep her on the Prevacid and Reglan though. The nutritionist explained that Makily is back on "her" growth curve. She had fallen off even "her" curve back in February when she got rotovirus. She is proportional weight to height though so that tells them she is growing well. We are changing her formula to Nutren Jr. It is a toddler formula with 30 cal/ounce instead of the 20 that she is getting now. We are weaning her VERY, VERY slowly from the alimentum. I don't want a whole bunch of GI issues starting so they were agreeable and gave me a nice and slow weaning schedule for that. Please pray that Makily's tummy can tolerate this formula. It is "pre-digested" like her Alimentum but not as much so that means Makily's tummy has to work harder to digest this. They said that she is older and bigger and are confident that she can do it! She also seems to like the taste of this formula better, it's vanilla flavored while her old formula is "garbage" flavored....smells like poop too! hahahah sorry!

While we were waiting for the doctor to come in Carrie was snuggling with Makily. Her daughter Sarah wanted to snuggle too so she went over and put her head over near Makily's. I HAD to snap a picture and luckily had the camera ready! Is this precious or what!??! Isnt Sarah BEAUTIFUL!? *NOTICE the big drool spot on Carrie's shirt? We lovingly refer to that as "Makily prints" my shirts always has "Makily prints" on them, I don't remember the last time I didnt have one!*


I will close with this last story and picture. Makily has mastered a new thing. She can sit up in the shopping cart with the little seatbelt around her AND NOT FALL OVER! I don't even have to put blankets or toys around her!!!! We walked through K-mart the other day and she sat up the whole time. So yesterday I went to Lowe's to look for wallpaper border. I excitedly put her in the cart, I didnt plan on being there so long but I got caught up in all the home improvement stuff! Makily got tired after about 15 minutes and started bobbing her head. I picked her up and layed her down in the cart. SHE WAS SO CUTE, and I got stopped about 50 times by people telling me how sweet and cute she was and saying "what a great life she has eh?" I snapped a picture here it is:

Thursday June 29, 2006 12:26 AM

We went back to Orlando yesterday and saw the neurologist for Makily's 2 week hospital follow up. It went well. We are starting to wean her down off the Dilantin. Eventually she will just be on the Topomax at night. I will really like that. She weighed 21 lbs yesterday! I am so happy at how well she is growing and gaining weight lately. I finally seem to have gotten her feeds at a level that are good for Makily.

Her ear infection seems much better although she is still picking in her ears every now and then. They arent draining so that is a good sign. I am wanting to avoid antibiotics with her as they always tear her stomach up.

Tommorrow we are making another trek to Orlando. My friend Carrie and her little girl are going with us. This appt is to see gastro and the nutritionist. I know they are going to want to start trying to wean Makily from the Alimentum to a toddler formula with higher calories. I know she needs this but we have had nothing but problems in the past when we tried this. I am keeping my fingers crossed that all goes well with that.

We are getting ready for our trip to Niagra Falls next month. I have already bought the plane tickets and reserved everything. It is going to be such a blast! Thanks to Holly for referring us to them. I can't tell you how amazing it is for us to be able to go. Thank you thank you thank you!!

I am going to bed now so I can get my lazy butt up in the morning to walk/jog aka "wog" and then get ready to head to Orlando.

Thursday, June 22, 2006 11:31 AM

Good Morning from the Caldwell Household!!! Long update today guys!

This week seems to have FLOWN by! I still keep thinking it's Monday and here it is THURSDAY! Lots of good things happening here this week. Makily is blossoming again before my eyes. It's crazy that it seems like she will not gain any new skills for a long time and then all the sudden it's like a lightbulb has been turned on. She is SO alert when she is awake now and is doing new things. Grabbing and HOLDING onto my hands, rubbing my arm and back.

Makily and I went to Brennan's house yesterday to visit. I have known Brennan's mommy Carrie since we were in middle school. Brennan has CP and is a little miracle kid much like Makily. I was so pleased to see how well Makily adapted to being in a new place with other children and people she isnt around on a daily basis. She really seemed to like Carrie's daughter Sara (who by the way is a great gymnast and she showed me many of her stunts) and little Logan who was sweet enough to share "his chair" with Makily. Makily even sat with Carrie and HELD HER HAND! I think Makily MUST have instinctively known that Carrie was another "special mommy" too so they bonded right away. Carrie's hubby made us dinner, what a guy eh? It was really neat to spend time with another family that KNOWS alot of what we are going through and have been through....I honestly felt so comfortable...I am so glad that Carrie and I have reconnected. Brennan and Makily laid on the floor together and watched The Wiggles. At once point little Brennan got onto his side and curled up next to Makily.....it was SOOO VERY SWEET!

Makily and Brennan at the park on her birthday! (I need to get more pics of them together!!)



It's amazing to see Makily adapting and being comfortable around new people and in a new place.....she used to ABSOLUTELY hate change. New people made her nervous and she usually wouldnt let them hold her. Now when new people are around, Makily will look at me as if to say "is this okay mommy?"

She did great things in therapy with Mrs. Elon! SHE DRANK A FEW SIPS AND SWALLOWED FROM A BOTTLE! We tried 3 different nipples but decided that Makily prefers a preemie nipple most right now. It's smaller and easier for her to manage. Elon even commented on how alert and happier Makily seems and noticed how she is tolerating things much better than before. She told me she NEVER expected Makily to do so well AFTER a seizure and but was happy to see the changes for the better!

Makily and Mrs. Elon several months ago....they love each other!!


I am really wondering if Makily has been having absense seizures for a while now. I guess I will never know. I am just glad we have her on meds as they seem to have more of a positive effect than I had imagined. It's funny because I WAS DEAD SET against seizure meds and now I can see her doing so many things that I am actually thankful she is on them now. She is sleeping a bit more BUT when she is awake is so much more alert and happy that I don't mind the sleeping as much.

Unfortunately Makily DOES have an ear infection right now. She is getting ear drops and I am hoping they take care of it. She was a little warm this morning so I gave her some motrin and she is happily watching "Lazy Town" right now.

*********HUGE, BIG THANKS!!!**********
To whomever referred us to Fore The Children in Tampa. I would love for you to step forward and let me know it was you!!! I am so grateful! ALSO HUGE THANKS to Fore the Children. They have funded Myself, Makily and my sister Elizabeth to go to the Chromosome 22 conference in Niagra Falls July 21-24th!!! I have so wanted to go and have gone back and forth about going for months now. This all just fell into place PERFECTLY! I cannott thank FORE THE CHILDREN enough for their genorosity. This is a wonderful organization and if you are looking for a charity this is one to give to. Here is a link to their page: http://www.forethechildren.com/welcome.php They were so efficient and kind. The process of applying and getting funded took LITERALLY ONE DAY. We had the funds within less than a week. If you are a special needs parent you know that you fill out tons of paper work and make a zillion phone calls a day to get services or help with your child. The fact that this process was so easy was a MUCH WELCOMED experience.
THANK YOU AGAIN FORE THE CHILDREN!!!

I have blabbed long enough! I will shut up now and leave with this picture of my little angel and me. I swear she is such a joy and blessing, I just adore her.

Saturday, June 17, 2006 10:06 am

GOOD MORNING TO ALL!

Things are going great here in the Caldwell Household. It's hard to believe that a week ago TODAY AT THIS MOMENT my baby was on a ventilator and I didnt know if she was going to live or ever be the same. She is such a MIRACLE!! I had mentioned in the last entry that Makily had seemed to lost some of her spunk and fiestiness (is that a word? LOL) Well I have to take that back now. She totally is heself now. Kicking, laughing, smiling AND FIGHTING me as usual. PAM YOU TOLD ME I WOULD BE EATING MY WORDS AND I SO AM! The second day home she was right back to fighting me when I brushed her toofers and her hair.

She still has the tremors a little on the meds but it isnt as bad as it was the first few days. It doesnt seem to bother Makily but it does worry me a little. Every move she makes that even resembles a "shakey" motion I get nervous. I know that will go away over time. The sleepiness IS an issue but I expect that it too will get better over time. I KNOW once she is off the Dilantin it won't be an issue. The other seizure med Topomax is only at night so hopefully she will start sleeping through the night. It's just that she is on the Dilantin twice a day adn the topomax before bed and I think that's why she is SLEEPY MCGEE!

Some GOOD has come out of this. I have noticed that while Makily STILL has sensory issues some of them seem better if you can believe it. She actually was rubbing MY back yesterday when I held her...she has NEVER done that. She is also initiating holding your hand and doing it for a while instead of jerking her hand away as if she was burnt by the touch. I think possibly the meds are taking "the edge" off of some of the "weirdness" of certain senses for Makily. She has always been a snuggle bug but it seems like since the seizure last week she is even moreso.

The first night we brought her home I layed on the couch with her for a long time snuggling. I listened to her breathing and took in Makily's sweet smell and her soft skin and was so thankful that I was able to do that. I am trying to cherish every single moment with her as this has been yet another wakeup call to me. Sometimes when she IS doing so well I forget that she is not "normal" (hate that word by the way) and that anything can happen at anytime with her. She was TOTALLY FINE all day before this seizure. I remember when they were trying to get her intubated and were having a hard time, I kept seeing flashes of Makily smiling, laughing, touching my face and hearing her sweet sounds in my head and it was horrible to think that I may never experience those things ever again. We are so blessed with her, to be her parents and see all the miracles in her life. I am so thankful that God sent her to us and for every second I have with her.

Thursday, June 15, 2006 5:36 PM

Sorry I havent updated today. We have been trying to get settled back in here at home and get a routine with Makily's meds and feeds. Plus I have been lazy! LOL

She is doing well. She is still pretty weak and her voice is VERY soft but it's getting there. I seem to notice a little more strength in her muscles everytime I pick her up. This morning she was breathing pretty fast so Allen did CPT on her and we gave her a breathing treatment and then did more CPT. She is having a hard time coughing because everything is so weakened from being on the vent. After we did that routine with her I suctioned her and helped her cough....she brought alot up and sounded better.

She is more docile then I am used to and I imagine that is due to the meds and/or going through being on a vent and paralyzed for 3 days. I brushed her teeth last night and rinsed out her mouth....usually this REALLY MAKES HER MAD but she didnt cry at all. Then we brushed through her hair which ALWAYS INFURIATES HER and she was very good and sat there while I combed out all the knots in the back. I miss my fiesty baby and wish she would fight me more....how often do you hear that from a mommy huh? She is giving us smiles here and there and loving to be held and snuggled back to sleep. She is sleeping alot but I think that is also due to recovery from everything that's happened.

The Dilantin and/or Topomax is giving her the tremors. They are very mild but I hate it just the same. It's usually not too bad except if she cries or gets really excited. That's when I notice it's at it's worst. I am hoping that after her body gets used to the meds that it will go away.

Other than that things are good here. She is on the apnea monitor at night and we are sleeping with one eye open around here. I am just thankful that Makily is here and recovering from the weekend.

Please keep us in your prayers.

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I would like to thank whoever submitted our names to "Fore The Children, Inc." (www.forethechildren.org). They help medically fragile and cancer kids. They contacted me yesterday and asked if there was anything they could help us with. I told them about the chromosome 22 conference in Niagra Falls this summer and they are sending us a check for the cost of the trip!!! I can't get over how incredibly easy the process was and how friendly and helpful everyone was. I am overwhelmed at the generosity of this organization and at whoever referred us. THANK YOU SO MUCH!!! We are so very blessed!!!
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Wednesday, June 14, 2006 11:57 AM

SORRY I AM JUST NOW UPDATING!

Things are going AMAZINGLY WELL. God is so good and it gives me chills knowing what my daughter looked like just 48 hours ago and what she looks like now!!


WE ARE GOING HOME.........TODAY!!!!!!!!!!!!!!!!!

The nurses went on and on about how rare it is to go home FROM the PICU and they are all just amazed at how awesome Makily is doing.

She is moving and wiggling around as always. She can't really cry yet but has tried several times. Her voice is VERY soft and weak. She watched TV last night and was just so active. The nurses told me they were in and out of her room because Makily was kicking off the oxygen saturation monitor or had wiggled herself sideways in the bed! hahahahahaa NOW THAT IS MY GIRL!

Makily's fever is gone. She has had NO TWITCHING whatsoever since the Ativan was started 2 nights ago. She has been off the Ativan since yesterday morning and still no twitching. Her 36 hour EEG showed NO SEIZURE ACTIVITY AT ALL!!! These are all WONDERFUL SIGNS. Makily is still at very high risk for seizures though. She will be on Dilantin twice a day and Topomax once a day. The Dilantin they hope to wean her from within the next 2-4 months. Then she will just be on the Topomax. They say that since she is at such a high risk that she will have to be on Topomax for 2 years. As long as she is seizure free, and has a normal EEG during those 2 years then we can talk about weaning her off of it.........I am not thrilled about her being on seizure meds ESPECIALLY FOR THAT LONG AMOUNT OF TIME but again it's something we don't have much choice in.

I am very scared about seizures now....it's funny how just a week ago I was posting that I wasnt worried about it at all!! My biggest fear is that she will have one in the night and I will not wake up when it happens. This one went on for so long and didnt stop until she had several doses of meds in her so I worry about what may happen at night if I don't catch it. She will be sleeping in my room with me once again.....and honestly I don't know if I will ever put her back in her own room now. This has really shaken me and Allen both.

Even though this was a TERRIBLE, HORRIBLE situation I have to say that once again God has shown that he is watching over our family. Makily cried just a minute or two before her seizure and woke me from a dead sleep. I believe that was God waking me up so I would catch it and be able to help Makily. I dread what may have happened had I not woken up and saw the seizure happening......she was perfectly silent through the seizure and so had she not cried right beforehand I may have slept through the whole thing. I have a horrible feeling that Makily would have seized all night and may have stopped breathing. I cannott imagine waking up and finding her like that in the morning. I PRAISE GOD WITH EVERYTHING THAT IS IN ME THAT I WOKE UP AND CAUGHT IT. This just proves AGAIN that Makily is meant to be here and shows what an important purpose she has in this life.

Thank you for all the prayer, love and support. It is the best feeling knowing that so many people love my child.

Tuesday, June 13, 2006 9:38 AM

Today has started off VERY GOOD.

Allen and I arrived in the PICU at 6:15am. They had just finished wearning Makily from all her sedation meds. About 15 minutes later she began moving around. THIS WAS WONDERFUL TO SEE. She was kicking her little legs and trying to grab them with her arms (she is restrained so she couldnt.)

She was actively breathing over the vent which was only giving her 5 breaths per minute. There was NO twitching episodes last night since they started the Ativan drip. Her heart rate remained stable and she didnt desat at all last night either!

They were getting ready to extubate her when the EEG lady came in to download the information out of the computer. This meant the EEG would be down for at least an hour. I asked her to wait as Makily had just been taken off the Ativan and was about to be extubated. I explained that the Ativan seemed to have stopped the twitching right before she was hooked up and so I didnt want the EEG to stop because if Makily is going to start that up again then the extubation and lack of Ativan trigger the twitching and we will catch it on the EEG and know EXACTLY if it is a seizure or not. I felt that if we stopped the EEG we would ONCE AGAIN miss the twitching. She did argue with me a few times and then finally said she "could" wait until 10am BUT that I needed to understand that the docs would not be able to give me a full report until tomorrow. I told her FINE. Thankfully she left. They also wanted to keep Makily as calm as possible before the extubation and pulling all that off her head would have really upset her.

They extubated her and things went well....she is struggling a little but she always has the day of extubation. She is on nasal cannula oxygen and we are doing everything we can to keep her calm, happy and quiet to get through the day.

Neuro came in and reviewed the EEG IN THE ROOM!!! (so much for not being able to do it until tomorrow!) She said that the EEG looked great BUT SINCE they did start it AFTER the twitching had stopped and when they started the Ativan that she would leave it hooked up until this evening to be on the safe side. She really feels that the twitching was a side effect of the paralytic. She explained that if it is not at a "theraputic level" that it can cause muscle twitching. She was getting the correct dose of the med BUT Makily's body metabolizes meds differntly than your average kid and so it makes sense that her drug level may not have been where it should be. They were also having trouble getting her Dilantin levels where they should be. They will be checking that this morning.

I do believe that Makily is STILL my Makily and that her sweet little personality is in there. When she was extubated and was calming down her BIG OLE BEAUTIFUL blue eyes were open and puffy but she did try to smile at me when I talked to her. She is very swollen all over. She also tried to smile for Daddy and surprisingly, the respiratory therapist. She is still very "junky" as far as congestion and she is struggling a little BUT HER oxygen is maintaining a level of 95% and that is GREAT! She has been kicking her legs alot and trying to grab them but her hands are still restrained to keep her from pulling all those EEG leads off. She is watching Dora right now and as comfortable as she possibly can be considering everything that is happening.

Makily is running a higher temp right now of 101.5. They are going to do a CBC and 3 blood cultures to try and find the source. I do not think this is an ear infection as she just got her tubes yesterday and had the antibiotic drops for that. Her lungs looked great on x-ray last night so we are all scratching our heads. Hopefully the blood work will give us an idea of what is causing this fever.

Please continue to pray.

THANK YOU FOR ALL THE ENTRIES IN THE GUEST BOOK THEY REALLY MEAN ALOT TO US AND ARE VERY ENCOURAGING AND UPLIFTING.

Monday, June 12, 2006 10:05 am (*and again at 7:41pm*)

This is Trish updating again.

When Allen and I got into the PICU this morning around 9 Makily was resting peacefully. Very shortly after I noticed her oxygen saturation was at 91....this isnt great especially being on a ventilator. She started to desat even more and the nurse came in and yelled for respiratory to come in. Makily desatted down to 42.....the nurse had to bag her. Respiratory came in and suctioned and did some other things and got a large mucous plug up through the suction. They watched her closely after that and she seems to have recovered.

The PICU doctor came in to talk to me after that and explained that since Makily's respiratory status isnt that great right now that they would like to wait to extubate her till tomorrow. She actually remembered us from when we were here from the cleft repair in Sept. They are also going to put a central line in this morning because all her veins are shot or too hard to get anything in and she is on LOTS of meds that she MUST have.

Right now they are putting in her ear tubes at the bedside. I imagine they will be doing the central line not too long after that.

Last night Makily was still having those shaking spells and the elevated heart rate. I am not getting a clear answer on what exactly it is. It can be a number of things one of which is a side effect of the paralytic she is on. It could also be that she is waking up somewhat and is freaking out because she can't move and doesnt understand why. Or of course it could be seizure activity. The next time she has the shaking spells they will do an EEG to see if their is any abnormal brain activity along with the shaking and that will give us a clear answer on whether or not it is a seizure. I pray that is NOT what it is.

Please keep my girl in your prayers and I will update when I get a chance.

******UPDATE 7:41PM******

After my morning update Makily desatted again, thankfully the nurse was right at her bedside when it happened so her sats didnt get too low. This was right after the ear tubes were placed and RIGHT before the central line was put in. Allen and I were allowed to go back in once the central line was successfully in place. She desatted then down to 27nd had to be bagged again. The PICU doctor came in and talked to me and ordered a chest x-ray. It revealed that Makily's ET tube was down too far and so only one of her lungs was being fully perfused. They adjusted the ET tube and she has not desatted since....
About an hour later she bagan the twitching again. EVERYTIME she starts this I have the worst feeling of anxiety...I can't even describe it. She already looks horrible due to all the fluids and swelling so watching her twitch all over just makes it worse. Makily is still on the sedative, a paralytic and Dylantin every 12 hours. Neuro came in and said they would order a video EEG to see if they could catch the twitching spells. Then the PICU doctor informed me they would add Ativan to her IV meds. Ativan is a med used for seizures AND sedation. Within 30 minutes of starting the Ativan drip the "twitching" stopped.....AND OF COURSE....then they came in with the EEG machine to hook up to Makily. She has not had the twitching since the Ativan was added. Again this still does not tell us whether it's seizure activity or just that the Ativan is sedating her more so the twitching is gone.

The plan for tomorrow is to extubate her at about 7:30am. They will slowly start weaning her from her meds tonight to prepare Makily to wake up enough to breathe completely on her own when they remove the tube. I was told I would be allowed in the room when they extubate her. I am glad I can be there and afraid at the same time. I witnessed this once with Makily and let's just say it was VERY ROUGH. I feel that as her mother I should be there if I am able though so I will just tough it out just as my girl has been doing since Saturday morning.

Please continue to keep us in your prayers. I have enjoyed reading all the guestbook entries and have cried reading most of them. They are so encouraging during this time and knowing that so many love and care about my little angel is so touching.

THANK YOU ALL AGAIN.

Sunday, June 11, 2006 11:45 am

This is Trish updating.

Makily is still on the vent. They are giving her the meds for sedation and a paralytic to keep her calm and from pulling out the tube. She was trying to get her feet up to her face yesterday to pull it out as they had tied her hands down. This was when her last dose of sedation had worn off....they decided it would be best to paralyze her because she was so fiesty.

She is being fed through the G tube normally and at this point is tolerating that just fine.

This morning when Allen and I came in Makily was doing a strange "twitching" motion with her arms, legs, chest and stomach. Her heart rate was also 170-190. I got it to dip to about 140 by singing to her. The neuro was here and witnessed it. She was not sure if it was seizure activity or something else. She called the nurse in who explained that the meds were wearing off, Makily was waking up and trying to move. Since she has the paralytic she can't move and of course does not understand why so it is scaring her. She is also running a low grade axillary temp of 100.4. They think that the increased heart rate is due to the temp. She is also breathing 6-10 breaths over the vent so that is proof that she is waking up some. She has not opened her eyes yet though. They did give her a bolus of the sedation med to calm her but it's still going on every now and then. I am hoping it stops.

I am still shocked that all this happened and I asked the neuro why this is happening now and not earlier. Why is it that she is 2 years old and just now having this issue. She explained that the combination of Makily's trisomy and the 3 brain abnormalities that it was most likely just a matter of time before seizures started. She also said that some people can go 15-20 years with no seizure in their life and that it will just suddenly start. Her EEG showed no seizure activity but did have slower waves. That was expected because of all the medications she is on to sedate her. I asked if she could give me an idea of what triggered this seizure. She said that stress, overstimluation, not eating right and other things could be factors. I felt bad because Makily does get alot of stimulation. She told me not to blame myself that it was bound to happen and obviously the more stimulation Makily gets the more she will develop. Now that we know that she has this problem we can medicate her so it won't happen again. I am still sad that this has become and issue. It just is so unfair.

Tommorrow they plan on placing her ear tubes around 10am. Then they will slowly wean her off the vent and extubate her. I am nervous about this obviously but I want my girl back. I miss holding her so much I can't stand it. Last night we went to eat and when they asked us how many and we said only 3 (My neice was with us) and not 4 my heart broke. I miss her so much. I can't stay in the room with her at night because they do not allow it in the PICU with vent kids. Allen and I are staying at the Ronald McDonald house and it's very nice and LUCKILY right next door.

Allen and I are holding up well. He as always is THE ROCK and I am crying alot but I can deal with it. I am so darn tired I am having a hard time keeping my eyes open though! I want to thank all our family, friends, church and well JUST EVERYONE for all your love and prayers. They have meant the world to us during this time.

Please keep praying.

Saturday, June 10, 2006 9:39 AM CDT

Hello--this is Auntie Deb updating for Trish and Makily. Please keep Trish, Allen, and Makily in your prayers.

Makily woke Trish up fussing this morning about 3:15, Trish thought she was refluxing, so she gave her some Prevacid, and Makily seemed to be settling down. Trish was trying to go back to sleep when Makily made a noise. Trish turned on the light, and Makily was staring vacantly at the ceiling. Trish called her name, shook her, pinched her, and clapped her hands over her head, and she did not respond to her. She was, however, breathing. Trish went to get the phone, and that is when Makily began having the siezure. She called 911. It took the paramedics 15 minutes to get there, and Makily siezed the whole time. The Paramedics took one look at her, picked her up, and ran for the ambulance. Her oxygen level was in the 70's when they got her on the ambulance, so they gave her oxygen. They also gave her versed to try and stop the siezures. They tried to intubate her in the ambulance, and of course, couldn't do it.

When they got to Munroe, They intubated her, and put her on the ventilator, and did a chest x-ray, blood cultures, a lumbar puncture, and a CT scan of her brain. The CT scan came back showing that the ventricles in her brain are slightly enlarged. They were not sure if this is what caused the siezure, because she had a CT at Shands that basically said the same thing, and this is the first siezure Makily has had. Makily did not have a fever, so this could not be what caused it.

It looks like the siezure could have been caused by either the enlarged ventricles, a hypoxic episode (Makily has been having a lot of mucus and saliva lately due to teething and a cold. We were thinking maybe she got choked up on some of her secretions, didn't get enough oxygen, and started to sieze), or the fact that Allen's father was an epileptic. He started to have siezures when he was 2. They got them under control, and he never had major problems from them, but this is obviously not something Makily needs.

Trish and Makily are on their way to Arnold Palmer by ambulance right now. Makily is still on the vent, and when I was in the room with Trish and Makily, she was still having siezures occasionally. They had to give her ativan to stop them while I was back there. Allen just got back (he has been driving like a madman) from a run, and is trying to gather up some things to head up there as well. Pray for a safe drive for him, because he is going on no sleep.

I will update as I hear anything new, or Trish will if she can get to a computer while she is up there. Please keep them in your prayers!!!!!

***UPDATE 6-10-06 @ 3:45PM*** I got a call from Trish and this is the latest news. Makily made it safely to Arnold Palmer, and started to fight the nurses and doctors and let them all know how much she did not appreciate the ventilator and the breathing tube. She was trying to pull the tube out with her feet while they were holding down her arms. They tried to give her some sedatives, but they were not working, so they resorted to giving her a paralytic. They did not want to risk losing her airway. We are all breathing a sigh of relief; Trish was very concerned that the length of the siezure had caused brain damage, and to see her telling the doctors and nurses no way made her feel much better. Makily is resting quietly now.

She had her MRI. Trish said that halfway through the scan, the tech asked her if Makily had ever had a VP shunt before. Trish said no. She asked the tech did she think Makily needed one, and she would not answer her. Makily will have an EEG again today, and then the Neurologist will see them either today or tomorrow to discuss the results and their plan. We are all praying that she will not need a shunt. One of the doctors said that some people just have enlarged ventricles, so hopefully, that is the case with Makily.

They are going to put Makily's ear tubes in on Monday since she is sedated, it was scheduled for the 16th anyway, so they are just going to get it over with now, then they will try to get the breathing tube out later that day. They want to extubate her slowly because of her past history. The people at Arnold Palmer are so wonderful, and are taking good care of Makily.

More updates to come as I get phone calls.

***UPDATE 6-10-06 @6:20 PM*** The Resident and the Radiologist came in to see Trish and Allen. The MRI showed that there is extra fluid in the front portion of the brain, and they said that lots of kids walk around with this amount of fluid and never have a problem. They also found that the portion of the brain that controls fine motor skills, gross motor skills, and sensorimotor is smaller than it is supposed to be--it is not alarmingly smaller, but it is not the size it should be. They believe that the combination of the extra fluid, the genetic syndrome, and the smaller motor section is what caused the siezure, and it puts her at higher risk for a siezure disorder anyway. They said they do not think that Makily will need a shunt, but that the Neurologist was the one to ultimately make that decision. She will need to be on siezure medication. The Neurologist will decide which drug and adjust the doseage. They are concerned that due to the length and the severity of the siezure (it lasted about 30 minutes total and did not stop until they had a couple of doses of drugs on board) that she will need to continue to follow up with a Neurologist, and be on the meds. They are afraid that if she has too many more siezures like that, that she will suffer from brain damage.

Trish says she has noticed that Makily has had episodes where she will stare off into space for a few seconds, but then she is okay, and that is how this siezure started, so maybe she has been having them all along, and this was just the bad one?? Hopefully, we will have some more answers once the Neurologist sees her and talks to them.

Trish and Allen are staying at The Ronald McDonald House, and she wanted to thank everyone for their continued thoughts and prayers. I'll continue to update, or Trish will as we get more news.

Thursday, June 8, 2006 9:25 PM

Today was a LOOOOOOONG day.

It took quite a while to get to the neurologist's office. We took a wrong turn or two but we finally got there. I really liked the entire office staff including the doctor. Everyone was very nice. Dr. Andrews came in and we went over Makily's history. I had a hard time when it came to describing Makily developmentally. It's when I have to detail what she is/isnt doing that I am forced to look at how far behind she really is. I finally broke down and cried. I was TERRIBLY embarrased and the more I tried to get it together the worse it got. THANKFULLY my sister Elizabeth helped me through that part and I got myself together again. Dr. Andrews was very compassionate and understanding.
She did tell me after hearing Makily's history that she is at a higher risk rate for seizures and brain abnormalities. I already knew this but it is still not fun to hear. She explained she wanted Makily to have an sedated MRI and an EEG. She got us RIGHT in next door at All Childrens Hospital to have the EEG. Makily DID NOT LIKE IT AT ALL. They put this "goo" on different places on her head (right over her hair!) and then squish an electrode into the "goo" then place a piece of tape over that. Once she had about 15-20 electrodes on her head they wrapped her head in gauze to keep it all in place. Then she was handed to me. Makily was VERY ANGRY that we were keeping her from scratching her head and I was holding her arms down. I did the "ssshhhhhhhhhhhh/firm patt" while rocking her and she would fall asleep for a few minutes....then she would wake up mad again and fighting me to get that stuff off her head. She got through it though.

We then went BACK to the neuro office and saw the doctor again. She gave me news that absolutely made my day.

******Makily's EEG was NORMAL for a child her age*********

You have to understand that I can probably count on one hand the amount of "normal" test results we have gotten back on her. She said she was actually "impressed" with it because she did expect to see some slower waves given Makily's genetic condition but they were all NORMAL. I am getting chills typing that!
Only bad part is that this does not mean Makily does not/has not had seizure activity before. It just means she didnt have any during this test. Which leads us to the next step that I am not excited about. They want to do a 48 hour EEG at All Childrens in St Pete on June 26th. They will do basically the same thing they did today but instead of just the 30 minutes it will be for 48 hours. How we are going to get her to keep her hands out of her hair....I have no idea. I am not looking forward to it but I don't feel like I have much of a choice. I am doubtful at this point that she has any seizure activity BUT on the other hand I would never forgive myself if she DOES have something going on and then has a seizure that causes unreversible damage down the road. So to be on the safe side and put our minds at ease Allen and I decided we should go ahead with it.

As for the sedated MRI this will find any brain abnormalities/damage if Makily has any. I am going to see if we can coordinate with Arnold Palmer in Orlando to do the sedated MRI when she has her ear tubes placed next Wednesday. This will save Makily from having to be put under anesthesia another time. If they are unable to coordinate it though, she will just have it done at All Childrens in St. Pete when she goes in for the 48 hours EEG. I really hope we don't have to do it that way though. Makily going under makes me very nervous.

So that's where we are at now. It seems like we have so much going on but we are keeping it together. Thank you for all your support and prayers.

Wednesday, June 7, 2006 9:30 PM

Well tommorrow is Makily's neuro appt in St. Pete. It's at 10:30 in the morning so Makily, myself and Auntie Liz will be getting up early to get there on time. You all know just how much I LOVE early mornings. NOT!! I am such a night owl. I will live though. I plan on updating as soon as I am able to tomorrow if I am not too worn out!

Next week is Makily's ear tube surgery on Wednesday. Allen, myself, Makily, Auntie Liz and my mom are all heading down on Tuesday. Since we transferred all her care to Orlando, when she has surgery we all usually go down the day before and try to relax and have a good time together...and of course EVERYONE spoils the Princess all day long. We have made many fun memories doing this, call us crazy BUT it's our way of trying to make a bad situation into something good.

Makily's PT Janet has 2 standers she is going to let us try out on Friday. We are going to figure out which one will work for Makily the best for now and then she is going to loan it to me until we FINALLY get insurance to pay for hers. One way or another we are going to get that thing....and her kidcart! I really appreciate Janet letting us do that, Makily really needs to get up on her feet and have the proper supports and I can only do so much being one person! It's hard to hold knees, arms, hips and shoulders all at the same time when you have a little one SCREAMING at you.

2 other stories of the cute little ones in my life and then I will close for the night.

First off my nephew Micah is SUCH A LITTLE CHARACTER. The child say the most insane things EVER!! I was over at my sister's house a few weeks ago and I had Makily's AFO's on her. I stood her up and was holding her at her knees and waist. It was really cool because I never realize how tall she is until I stand her up like that. Well Micah had never seen her standing and was so sweet. He walked right up to her and hugged her and was just amazed, Makily smiled at him and they just stared at each other like....hey I know you!! After a while I sat her down to give her a break and he kept coming up to me and saying "put her back up....YOU CAN DO IT!!! COME ON AUNTIE TRISH....MAKILY YOU CAN DO IT!!" He loves Makily and it really shows. I think if we would let him he would drag her all over the place with him.

Another little one in my life is my best friends little girl Cameron, she is 1 month older than Makily. She ADORES Makily and has been around her since birth. Makily's differences arent weird to her either and to Cameron it's just the way Makily is. Well I had lifted Makily's shirt to hook her up to the pump. I felt a tiny hand on my arm and then heard Cameron say "Trish...pleeeeeease". I looked and Cammy was lifting up her shirt and pointing to her tummy. At first I didnt know what she wanted......it took her 2 or 3 times of her doing this that her mamma and I realized that she wanted me to hook her up to eat like I hook Makily up. We explained to her that she eats with her mouth and Makily eats with her tummy. She gave us the "ugly look" and walked away unhappy that I wouldnt hook her up. I just love that kid.

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PLEASE say an extra hard prayer tonight for Shelby Gagne and her family. The last I heard Shelby was really having a hard time and has been having some rough episodes as far as her breathing is concerned. She is also spiking temps very high and obviously these are not good signs. Please visit her page and sign the guestbook with any words of encouragement that you may have to offer.
www.caringbridge.com/visit/shelbygagne
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Monday, June 5, 2006 8:25 PM

TODAY'S APPT WITH CARDIOLOGY WENT GREAT!!!!

Makily did great and slept through most of the appointment. This made her EKG SO MUCH easier and faster than the last time.

ARE YOU READY FOR THE GOOD NEWS?

Makily's EKG has not changed at all. The cardiologist said that since she is doing well, growing (slowly but surely), and not showing any symptoms of her ASD's that WE CAN COME BACK IN A YEAR to discuss surgery!!! YES A YEAR! I can't tell you the relief that came over me when she said this. I know that it still needs to be done but I am estatic that Makily will get another year of growth and strength before going through heart surgery! They gave clearance for Makily to have her ear tubes replaced next Wednesday so we are still at a go for that.

Today was a great day and now we just have to get through her neurology appointment on Thursday. Not sure what to expect with that but I am preparing myself.

Check out the new pics and collages in the photo section and sign the guest book if you have a chance!

Love
Trish

Saturday, June 3, 2006 1:44 pm

I got Makily's results back from her x-rays of her hips and her back yesterday.

Good News:

HER HIPS ARE "WITHIN NORMAL LIMITS" WHOOOOO HOOOOO

Bad News :-(

She has a 7% curvature of her spine (scoliosis). I knew beforehand that she most likely would have some type of curve....BUT there was a piece of me that was praying it was just her hypotonia making her appear to have a curvature. I only notice it when her clothes are off. I know that her low tone is contributing to it. Scoliosis is also very common in Emanuel Syndrome kids so honestly I am not suprised.....sad? YES! but not surprised. I hate that we have to add yet another problem to her list of issues. At this point we will just monitor it and have x-rays every year. I AM PRAYING AND BELIEVING that it will remain at 7% ONLY and will get not worse. I encourage and ask everyone to pray and believe the same thing.

Makily has her LONG AWAITED appointment to see the neurologist next Thursday. It will be at All Chidrens Hospital in Tampa. I have heard ONLY wonderful things about them so I am not concerned about going to a different place for neuro. My sister Elizabeth will be going with me as Allen will be at work that day. Monday is her appt with the cardiologist (Allen gets to go..hooray) so please keep us in your prayers all week next week.

THANKS FOR KEEPING US WITH US!~

Tuesday, May 30, 2006 11:39 PM

Today was a strange day.

I checked my messages on my voicemail today. If you know me I am really bad about that. Anyway I checked it today and there was a message from the radiology tech at APH that did Makily's gastric emptying study on Friday.
She told me that the doctor (i don't know what doctor) reviewed her scan and said that her stomach is emptying NORMALLY. **scratching my head**

I don't know what to think. Here's why:
When a gastric emptying study is done you can see the contents of the stomach on a screen. It appears as little tiny white dots in a circular/J shaped pattern. At the top of the "circle" I noticed a small collection of white dots all squished together and asked what that was. The tech explained it was just formula that was all collected together or maybe some residual that was in her G tube. So after sitting the 2 hours it didnt look like to me any of the formula had emptied. It had moved but had collected what seemed higher up to me...it by no means had disapeared or went out of the screen view.
The tech explained in her message that when the doctor reviewed it that his opinion was that the "large collection of white dots" was HER STOMACH and the rest of the white dots was in her intestinal tract. He feels that her stomach had already started to empty before we even put her on the table. I don't know. I called gastro to see if we could get in earlier and we can't so we will see them June 16th and I will talk to the doctor about it then and see what he thinks.

Makily has an appt with cardiology on Monday June 5th. Thankfully Allen will be home and he gets to go with us.

Makily also had x-rays of her hips and back today. I don't have the results yet but I am hoping they all come back normal. I will update when I know more.

Friday, May 26, 2006 10:49 pm

Well today was a busy one. Myself, Makily and her G.G. went over to Orlando this morning to Arnold Palmer Childrens Hospital for Makily's gastric emptying study. They mixed 2 ounces of Makily's formula with a radioactive substance. Then I fed it to her through the G tube. Next we layed her on the table, they strapped her down and the x-ray machine took pictures of the contents of her stomach for 2 hours. PRAISE THE LORD Makily slept through this ENTIRE process. I was very worried she would be awake and scream the whole time.
If you remember when Makily was 3 months old we had this test done and they told us it took her tummy a total of 5 hours to empty 2 ounces. A "normal" newborn takes about 30 mins to empty 2 ounces....so obviously she had MAJOR emptying issues. They did a pyloroplasty the next day along with her Nissen to aid her stomach in emptying faster. I did ask back then if the test should be repeated to make sure the surgery worked and I was told it was not necessary.
Well today's test results are no better than her first...maybe even worse. I just have VERY preliminary results but basically after 2 hours Makily still had 97% residual....that means ONLY 3% had emptied out of her stomach over 2 hours.....the normal residual amount is no more than 20%. I was not surprised, this explains why she has massive diarrhea from time to time and then other times she retches. I am going to start her back on her Reglan to aid in her stomach motility (per Dr. Pierre, thanks for coming to the phone right away today....LOVE YA!). On Monday I will put in a call to gastro and see if I can get in sooner than our scheduled appt of June 16....and if not see if there is anything else we can do to get things moving better for Makily. People wonder why she is so tiny and this is one of the reasons. You can only feed her so much before she retches and then you have to stop. Her poor tummy.

On a better note we were able to obtain a handicap placard for our car for Makily. Dr. Pierre filled out the form and I went to the tag office and can you believe they asked me for Makily's drivers license?? I laughed and said "she's 2". They all looked confused and then finally explained that she had to be in the DMV system so I would have to take her to the DMV and get her a Florida ID!! They couldnt use my drivers license because I am not the one that is disabled they said....even though I am her legal guardian AND MOTHER!!! I wanted to scream. Anyway so after much calling, confusion, being told we would have to go to Citrus county and finally help from my Mamma we got an appt to get Makily's ID card. (we didnt have to go to Citrus county by the way) She was asleep and I had to hold her up and hide behind her head for the picture. There were several people there waiting, and looking at me like I was nuts, I can't say I blame them....I am sure they were wondering what the heck I was getting Makily a Florida ID for! It's awful cute though and makes Makily even more special because honestly how many 2 year olds have their own picture ID? Not many!

Unfortunately Makily didnt get the funding for Sunshine Therapy this year. We got the answer today. While I am disapointed we will just try again next year.

Saturday, May 20, 2006 11:29 PM CDT

Well Makily, myself, Granny Julie and Tammy went to see the audiologist and the ENT in Orlando on Friday. It was an early morning appt which really STINKS but I dealt with it.
She still flunked the "normal" hearing screen. I knew she would but if Makily does not want to turn her head to what you are saying she isnt going too. She did turn one time to see a toy that was playing the cymbals but other than that she just ignored everything else. I KNOW she can hear so I am not concerned, her ABR was "grossly normal" so I know it's all behavioral.
Her left ear the tube is still in BUT is partially plugged and not functioning well. The right ear the tube is laying in the ear canal...where the tube was has healed up and there is "amber fluid" behind the ear drum. Makily had been running a temp on and off and so I know that is why. She also has cold symptoms which always bring on an ear infection.
She is scheduled to have her tubes replaced at Arnold Palmer Childrens Hospital on Wednesday June 14. I am not overly concerned as she did so well with having the last set put in and not having ANY PROBLEMS from the sedation. She came out happy as a clam....a little high but other than that she was good.
He did mention that he most likely will want to remove her adenoids eventually. He said if the ear infections continue to be a chronic problem (which in most Emanuel Syndrome kids it is) that it's wise to remove her adenoids and possibly her tonsils. He explained that he hasnt pushed it before now partially because of her other issues but mostly because she is so small. Personally I don't think we will be doing it unless her adenoids and tonsils start to cause issues. We will see what happens further down the line.

I have to set up an appointment on Monday for her to see the cardiologist to get clearance. They also need to see her again just for her 6 month follow up and to talk about a heart surgery date...which I am not looking forward to.

Makily got her AFO's 2 weeks ago. They are basically ankle splints....they keep her from trying to stand on the side of her foot and to stand flat. I will admit the first time we put them on her I got a HUGE lump in my throat. It reminded me of the scene from Forest Gump when they put the braces on his legs and feet...and they called them his magic shoes. My sister Deborah lovingly has started to referring to Makily's AFO's as her "magic shoes". I was sad for a bit about the fact that Makily needs these to learn to stand and walk and that I thought of a handicapped child from a movie when looking at her. Then I later thought that while Forest Gump had to wear braces on his legs that he ended up running so hard that he broke them and they shattered into peices on the ground. I pray that one day Makily will break hers too.

**Please sign the guest book if you have a second**

Monday May 7, 2006 12:15 am

Since Makily came home from the NICU we have kept her in our room with us. She either sleeps in her bouncy next to the bed OR when Allen is on the road she sleeps in the bed with me. For a long time we had her in our room and in the bouncy for medical reasons. She was sick so much on and off that first year that I could NEVER have slept with her in another room. Then when she medically started doing better, I didnt want to put her in her own room. It had become normal having her with me 24/7. I do realize that she needs some independance from me...I have realized that for a while. Her 2nd birthday party really forced me to realize that Makily is now a toddler, she is doing well and there really is no "true" reason for her to be in the bed with me or in my room for that matter other than my heart aches thinking of it. What's ironic is that when I was pregnant with her I swore that by the time she was 3 months old she would be sleeping in her crib every night...I meant business....yet another part of me that totally changed after I had her.

So in light of that, Allen and I decided that we would put her in her own crib, in her own room this weekend. We told each other that if she cried or had a rough time we would bring her back in with us and try later on down the road. Secretly I was hoping she would immediately cry or need me and I could run in and save her from her scary crib. I know it even bothered Allen a little because once we put her in her crib we both ran straight to our room to listen to her on the monitor....we did this for at least a half an hour. Makily slept in her crib ALL NIGHT...all by herself. It gives me a lump in my throat just typing it BUT I AM ALSO SO PROUD OF HER. Tonight is her 3rd night in her crib and she really seems to love it.

Here are a few pics of the Princess's crib and some of her in it. I need to add that we worked SO HARD on her room and on this crib. There have many many times since having her that I would walk in her room and think "what a waste and shame that no one really gets to enjoy this cute room". Well now the baby that it was designed for finally gets to enjoy it.

Thursday, May 4, 2006 10:27 PM CDT

Well I got alot accomplished today.

Made several phones calls, sometimes I think I need to surgically attach a phone to my head.

Makily has an appointment for her Gastric Emptying Study at APH on Friday May 26 at 7:30 am. For those of you that know me I am so thrilled we get to be there so early in the morning! I just love mornings.....NOT! LOL I made another appointment for her to see gastro to review the results of that test on Friday June 16 at 10:00 and when that appointment is over we see the nutritionist that will figure out what formula to put Makily on. She is still on Alimentum which is only 20cal/oz and she needs more then this as it is a baby formula and she is a toddler now....ugh that makes me sad to say it! I am nervous about changing it because she has had so many problems in the past with her tummy and different formulas but I know I need to at least let them try to get her weight up.

I also have to take her on Friday May 19th at 8:30 for a hearing screen and then at 9:00 for a visit with the ENT. I hate the hearing screen because Makily does not usually pass them....NOT because she cannott hear but because if she doesnt want to look at something she won't, no matter how loud it is. I have never seen someone that has the ability to ignore things like Makily can. I know she can hear because she had the ABR (which is the sure-tell test studying brain waves with hearing) last year and it came back normal...she also responds to sound all the time here at home so I am not concerned about her hearing. I just am tired of going through the same test and listening to them tell me that they can't get conclusive results on her. Tell me something I don't know! Makily is alot of things and CONCLUSIVE has never been one of them! We are seeing the ENT because one of her tubes is out and the other one is on it's way out. She is the ear infection princess so we want to stay on top of that.

I also had to update all her stuff with CMS and I did get some WONDERFUL news. Makily FINALLY was approved by CMS for her KIDCART!!!! We are still waiting on the stander but at least we have half of the order approved. It seems like BCBS just wouldnt budge and I really despise them for it but what can I do? I am just very thankful that CMS has approved her.

I also need to make a follow up appt for June with the cardiologist. I really should have done it today but time got away from me and honestly I don't want to take her. Last time they said she needed to gain some weight and most likely then they would go ahead and repair the holes in her heart. Well she has gained weight so I am assuming they will want to get the surgery scheduled. I have a lump in my throat just thinking about it. I am thankful that they believe they will be able to close them via the cath method but to me messing with her heart at all is MORTIFYING. It's not one of those things that will just go away though, in the long run those two tiny holes will affect Makily's blood pressure, oxygenation and could potentially kill her in the future so I have to deal with it. It's a simple surgery though so I am sure it will all be fine (don't you like it when I try to convince myself ha ha).

I would also like to ask for everyone to pray for a caringbridge friend of ours. Her name is Shelby Gagne and she is 3 years old and fighting cancer. She and her family are going through a very difficult time right now and they need prayers for a miracle. You can visit her site by going to:

www.caringbridge.com/visit/shelbygagne

Her family has been keeping up with Makily as we with Shelby and it's so hard to hear when anyone is going through this but even harder when it's a child. Sometimes life doesnt seem fair.
Please hug your family's tighter and draw your children closer. Life is short and you never know what will happen tommorrow or if you will even get a tommorrow. Be thankful for your children...for their health, their life, for the blessing of just being able to have them. I think in this world people get so caught up in life that they forget what is truly important. I know in the past I have been guilty of it. Unfortunately it took me having a child that has almost died a few times and lived through several surgeries to realize that "things" are just that....."things". Didnt mean to get preachy, just had that on my mind tonight while thinking about little Shelby.

Love and Thanks to everyone who prays and thinks of us.

Monday, May 1, 2006 0:56 AM CDT

Things are going great here in the Caldwell household.

Allen is home all week this week. He took a week's vacation so we can get some things caught up here at the house. It's so nice to have him home. I cherish every day he is here and not on the road because he is such a big help. I honestly don't know how single mothers do it.

VERY EXCITING NEWS! My sister Deborah gave birth to a beautiful little girl on Tuesday morning. Her name is Delaney Elizabeth and she weighed in at 7 lbs 12 oz and was 21 inches long. She sure is a beauty and I think looks just like her mommy. She is dealing with some jaundice issues so please keep her in your prayers that her levels will go down. She is being checked again in the morning so keep her in your thoughts.

Makily is doing pretty good. Last week she was a smidge cranky and would get really fussy EVERYTIME you messed with her button or hooked her up to eat. I realized that it had been 3 months since we had but that button in. So Allen and I changed it to a new button last night. Makily screamed and cried but she doesnt seem so sensitive to it anymore. They say that the buttons should be replaced after 3 months so I assume that is why it was annoying her. Who know's with this kid....she surely keeps us all on our toes.

She has really been blossoming so much lately. She is starting to sign "more" when prompted and even will do a cute "squealy coo" noise to verbalize "more" when prompted. This is VERY EXCITING! She also has finally started to reach out for things so much more. Mostly it's just for my or Allen's face (which warms my heart like I can't even tell you) but this week she has started to LOVE Elmo and has reached for him several times.

She also has a new favorite movie, Lady and the Tramp. I have no idea what it is about this movie but there are certain parts that will make her laugh so hard. I LOVE watching her watch it. We now have a DVD player hooked up in the car (courtesy of Auntie Liz, thanks!) and she watches it while we are riding around town. It's actually helped her in therapy because I was having MAJOR issues with her falling asleep within MINUTES of getting in the car. Then once we got her to therapy it was a NIGHTMARE to get her to wake up and work out. The movies help keep her awake or else the car ride lulls her to sleep.

She is also starting to consistenly play what we call the "patt patt game". She will pat her hands on her lap twice.....then I will pat my hands on her or my lap twice and say "PATT PATT MAKILY"....she will then GRIN HUGE and patt patt on her lap back at you. This goes on for a few minutes until she is bored with it. This is a big thing developmentally for her because it shows comprehension and anticipation.

She is tripod sitting for alot longer these days although she whines at me while she is doing it. I have learned to differentiate between her "I am hurting" cry and her "I am spoiled" whine so usually when she fusses I just laugh and say NO MA'AM. She is very spoiled and while she deserves it I do realize that she needs to work harder to gain as many skills as she absolutely can. She also is pushing up on her arms alot more I CANNOTT wait to see her be able to maintain a crawling position. She will get there I just know it.

Feeding well, it sucks. She hates it and I feel so defeated with it sometimes. Some days she will work with me others she flat out refuses. We have resorted to syringe feeds (squirting liquids in her mouth via a syringe) and while that is working to a point and she doesnt fight me as much with it, I still feel like it's taking forever to get her to take any substantial amount at a time. *sigh* We are working on it though. She'll get there.

I know alot of these things may not seem like a big deal to some but they are huge for Makily. Remember when they diagnosed her I was given the impression she would be a vegetable. So every smile, laugh, giggle and coo is a gift to us. As much as she has been through and as many times as she has been hospitalized it's amazing she is doing so wonderful. Put that on top of her genetic disorder and if you ask me she is just an out and out miracle.
Please continue to pray for our family and especially for Makily and her development.
LOVE TO YOU ALL!

Sunday April 23, 2006 1:57 pm

Last week was a crazy one. I had a tooth that had been bothering me for a year and I finally had to get something done with it. I had it pulled on Wednesday (ouch) and so Makily and I stayed over at her G. G.'s house the rest of the week. I was taking pain meds and so I needed help with Makily. Her schedule is totally thrown off now because of it. The first night there she stayed up all night playing, giggling and talking in Makily language. She was real crabby yesterday and I started to think that she was getting sick but she is happy as a clam today. Her Daddy got home last night and I think his absense was what made her so cranky yesterday. She misses him so much and I wish we could win the lottery so he could be home more but no such luck here!

For those of you in Marion County or near Ocala, Makily is in the Ocala Mom's and Dad's Magazine this month in Dr. Pierre's ad welcoming Dr. Seva to her practice. If you see one pick it up and take a look. I am so proud and honored that Dr. Pierre asked to use her picture in the ad. It have only seen the proof of it and not the actual ad yet so I can't wait to get one for myself!

My sister Deborah is having a baby on Tuesday morning. We will be welcoming Delaney Elizabeth via planned c-section EARLY in the morning. Please keep my sister in your prayers as she is nervous about the surgery. I know all will go well but you can't help but be nervous about ANY surgery ya know? I will be posting pictures of the new little one as soon as I can....what can I say, I am a proud Aunt!

That's all for now. Please sign the guest book if you have a minute!

Saturday, April 15, 2006 11:07

I can't believe Easter is TOMMORROW! My how time flies! We have a fun day planned. First we are going to church with the family, Makily has a gorgeous easter dress that I can't wait to put her in. Don't worry I will be taking a ton of pictures...as usual! After church we are going over to Nanny and Pawpa's house to eat and then will be going to see Granny Julie and Uncle John. Makily sure is a busy and popular little girl!

A few quick updates. We still hadnt heard any word on Makily's stander. I called the stander people and they said that the insurance company said to call on the 18th for an answer. When I asked about the kidcart, they asked me when Makily would be 2. *sigh* Forget the fact that I filled out all of this information when she was fitted back in NOVEMBER. I told the lady she turned 2 on April 1. She said "well that is why they denied her because she wasnt 2." I asked her what we do from here and she said it needs to be resubmitted since Makily is now 2. I asked if they had resubmitted it yet and she said no. ***ARGH*** and people dont get why I get so moody sometimes. I asked her when they would be resubmitting it and she said "oh I will do it today" I wonder how long they would have waited to resubmit it had I not called? I guess it was too hard to look at a piece of paper with Makily's birthday on it. Okay I won't go there.

That's really all for now. I hope you enjoy the new pics up, we took them tonight as Makily's "easter photo shoot". She is so fun to take pictures of.
HAPPY EASTER TO ALL!

Monday, April 10, 2006 6:54 AM CDT

Makily had an amazing birthday party on Saturday! It was so much fun and we had alot of people come out to celebrate with us. She got so many new clothes and fun toys to help in therapy. She was a little sleepy during the party but we kept her awake until the end. I have a couple of pictures of her yawning but she toughed it out. We had a bubble machine and all the kids LOVED IT! It was such a beautiful day out (with the exception of some REALLY gusty wind).

Here are a few pictures from the day!

Giggling at her Auntie Trish


SOOO SLEEPY, wanting to nap on her Auntie Trish!


With Granny Julie and her G. G. (great grandma)


Swinging with her new boyfriend Brennan (isnt he the cutest?)


Thinking hard


Trying to go night night on Mamma


Nanny, Granny Julie, MAKILY and her G. G. (Makily wants those bubbles!)


Trying to sleep and eat cake at the same time..


Swinging with Mommy! (my favorite part of the day!)


There are a few more pics in the "photos" section on this page and also in out "family album" so check it out if you would like to see more.

Thanks to all that came to celebrate with us! We appreciate everything you all have done for us!

Friday, April 7, 2006 9:48 AM

TOMORROW IS MAKILY'S BIG SECOND BIRTHDAY PARTY! We are so excited and can't wait for all the fun. For those of you in Ocala that know us we will be at the Baseline Trailhead Boundless Park at 2:00 tomorrow celebrating Makily's 2nd birthday. Stop by and say hello. The park there is amazing so if you have kids I suggest you go, they will have a blast on the playground! I know I do! hahahaha It is built for "normal" and special needs kids alike so everyone should be able to play together.

This has been a busy, crazy week for us. On Tuesday I had dropped Makily off at her Granny Julie's to visit while I went and jogged. I ran back home and got ready and was going to pick Makily up and take her to therapy. Well I turned onto Julie's road behind a lady in a white truck. She stopped in the middle of the road, I stopped behind her. She then began backing up....I honked my horn and she continued to back up. I then LAYED on the horn and tried to hurry and get my car in reverse when I hear CRUNCH! She backed into me before I could move. I didnt think the damage would be that bad but I was shocked when I realized my hood was scrunched up, radiator busted along with a smashed headlight. Anyway it was towed, she was cited and my sister Elizabeth came and picked me up. Thankfully our insurance AND the lady's insurance has been amazing and we have a nice rental car until the Cavalier is fixed (I want to keep the rental, it's a Dodge Neon never thought I would like it but I REALLY DO!...OH NO!). Praise the Lord Makily was not in the car with me (I may not have been so nice and calm when it happened) and no one was hurt.

Makily is getting over her ear infection and URI. We have a recheck with Dr. Pierre today at 10:30 to see how her ears look. I think that it's better as she isnt cranky anymore and the drainage has stopped. She is still poking her finger in there so we will see.

She also got her AFO's in yesterday at therapy. They ARE SO CUTE! I picked out the design myself...red with red and white hawainn flowers. Unfortunately as cute as they are...they don't fit. I don't understand how they don't fit as THEY MADE CASTS OF HER FEET TO GO BY....but what do I know!? Janet (PT) has a call in to the AFO people so they will have to make a new pair.

She did great things in therapy this week.....we stuck a sticker to her nose and on her feet and she peeled them off (with a little help from mommy). This is huge for Makily as she has no interest in touching or holding anything unless it's on HER body. It's getting better though. We also but her in a "rubbermaid type box" filled with ball pit balls and she really seemed to like that. It's to help with her sensory issues and tactile defensiveness. Allen took Makily to speech with Mrs. Elon yesterday and they played and had a great time with this cute toy bus. Elon sent it home with us so we have been playing with it with her.

We also want to send Makily to Sunshine Therapy this summer. My friend Carrie told me about it. She takes her son Brennan there. It's 3 weeks long 5 days a week, 4 hours a day of intensive therapy. Sounds good right...well the $6900 price tag set it far out of reach for us. We just don't have that money laying around...oh how I wish we could win the lottery. Well I have applied for funding for Makily to go and we are waiting to hear back if it gets approved. I would obviously go with her and I really hope we are able too. If you want to read up on it their website is www.sunshinetherapy.com. My friend Carrie's son is on there under the "testimonials" page....his name is Brennan....what a cutie!

One last note. Today I put Makily in a size 12 month pair of skorts! It was great! They are a little big on her but they fit! What is even more special is this particular pair of skorts belonged to a little girl named Julianna Wetmore. If you don't know her she is the little girl with severe Treacher Collins syndrome that Discovery Health has done a few documentaries on. Her mother sent Makily a box of clothes a year ago when I contacted her to tell her how amazing Julianna is. Their family is so awesome. If you would like to read up on her she has a caringbridge site. Just go to the visit page and then type in fl/julianna (i think I will check later and if it's wrong I will fix that). Their family has been through so much and they are amazing people. Julianna is surely another little angel here on earth. I will put up new pics and update a little more later today.......have to run around getting Makily to the doctor and finish up her b-day party stuff!

Thursday, March 30, 2006 11:16 AM CST

I have to admit birthday updates are hard for me. Not because I am not overjoyed to be celebrating another joyous day in our daughter's life....but because it stirs up emotions in me that usually I am able to push to the back of my head. I find myself reliving so much that happened that first month of Makily's life. I feel the fear, sadness, grief and anger in waves out of nowhere during this time of year. It's hard for me to look at NICU pictures of her, the one on the site is the only one I can bear to look at. Remembering what life was like back then and how afraid I was for Makily and for our family's future is terribly hard for me.

On the other hand I can feel myself beaming in pride of all that she has been through and accomplished. She is FAR from the "lump" that I expected and that was described to me by the doctors when she was 6 days old. Being told your child will be severely mentally and physically handicapped is something that no parent ever expects to hear. It doesnt happen to you, that's something that happens to "other people"....then when it DOES happen to you, you find yourself thrown into a reality that you NEVER dreamed possible for your family. There is surely an innocence that is lost. You immediately put things into perspective when you realize how fragile life really is. Watching a less than 6 lb baby fight just to breathe is humbling. Watching that baby thrive, smile, laugh, coo and most importantly love is even more amazing than I could ever describe with words. I have learned that just because someone cannott talk or walk or even eat "normally" they can teach you more than a person with 2 college degrees or a genius IQ.

I no longer feel uncomfortable around special needs children and I am ashamed for feeling that way before Makily. I now know that they are truly angels sent here from God to teach us things that no one else ever can. For that I am so grateful. These children have a closer connection to God then we as "normal" people EVER will. Sometimes I wonder why God chose Allen and I to be Makily's parents. I don't know what he saw in us to grace us with such a gift. People tell me all the time how Makily is so lucky to have us as parents.....usually I just smile. What they don't know is how lucky we are to be HER parents. She has taught me and given me more than I could ever teach or give to her. I pray that Allen and I can be the parents to her that God wants us to be.

I also want to thank several people that have stood by us the past 2 years.

To my Mom and Dad, I could never thank you for the emotional, mental and financial support you have provided to us. I KNOW that whenever I can't take it anymore or Makily is sick or in the hospital you will be standing right there with Allen and I, helping us make tough decisions and supporting us fully. You have accepted Makily for who and what she is....and I know you both adore her. There is nothing I could ever do to show you how much your presence has meant to us during every hospitalization, surgery and diagnosis. I love you both so much.

To my Nanny, Deborah and Elizabeth (my sisters). You have been to countless doctors appointments with Makily and I when Allen was out of town. You have watched as Makily had EKG's, X-rays, blood work and surgeries. You do not know how much your just being there with us helped us through difficult times. Hearing your child needs heart surgery is not an easy thing, I am glad I never had to hear any of Makily's diagnosis's alone.

To Dr. Pierre.....gee what do you say to the woman that saved your daughter's life? Thank you just doesnt seem to cut it. You have gone above and beyond what most peditricians would do from the moment Makily was born. All the calls, compassion and concern for not only Makily but for Allen and I mean so much. During a time when I felt I couldnt trust ANY doctors, you were the only one I trusted.....I knew you woulndt do ANYTHING to harm Makily, you would NEVER use her as your "guinea pig" as others in the past have tried to do. I know that you love her and I am lucky to have a pediatrician like you.

Lastly to Trish, Justin, crazy Cammy and sweet little Aubrey. You guys have been there emotionally for us. I will never forget our weekend in Tampa at the Childrens Hospital with Makily when her tube came out. That was supposed to be a vacation......WHAT A JOKE! The thing is that you guys just adapted to the situation with us, you went to the hospital and then when things were okay you were able to go out to dinner and have a good time. That was my first time jet skiing, thanks Justin for not throwing me off. LOL I know that after going through that experience with us you recognized some of the things we go through that others do not see or understand. I know you love Makily like she is your own and you have never treated her like she is any different than your girls.

Trish, thank you for your listening ear and your understanding. You do not judge me for my thoughts and I know I have had some pretty scary and crazy ones in my darkest hours. I will never forget the night you came over after Makily was born and you hugged me while I cried so hard I thought I would pass out. You were silent and cried with me. I needed that and I thank you.

I cannott begin to thank everyone that has helped us through these last 2 years. But for those of you not mentioned we are so grateful to you all. Thank you for loving our family and accepting Makily for the angel that she is. We are soo blessed.

**SATURDAY APRIL 1, 2006**
It's hard to believe that 2 years ago today I was in labor with you wondering if you would ever come out. Daddy and I love you so much baby girl and we are so proud of you.

Time really has flown and at the same time stood still. I know there have been times I wondered if Makily would make it here to her 2nd birthday. SHe is so strong.
Unfortunately today Makily is sick. She has a raging ear infection in her left ear and the tube has fallen out of her right ear. She also has an upper respiratory infection. I am giving her breathing treatments every 4 hours, a decongestant and antibiotics. She got a shot of Rocephin yesterday at Dr. Pierre's office. Despite not feeling well Makily is in good spirits and has been kicking and talking to me and "Lilo" all morning long. Thankfully though we have her party planned for next weekend and I am sure she will be well by then.

Saturday, March 18, 2006 4:31 PM CST

Sorry it's been a while since I updated. Things are really going well here. Makily is continuing to improve and flourish. She is such a joy and blessing. As you can see I added a new video today and she is laughing her tiny head off in it. She is such a funny kid. Today was her Aunt Deborah's baby shower. Makily will have another cousin soon, her name will be Delaney Elizabeth. We are very excited about her impending arrival!

Still fighting with the insurance company on the kidcart, and stander...BUT I believe I will have a kidcart sooner than later. I found a friend that I havent seen in a while. We went through school togehter and her son recently outgrew his kidcart and she offered it to us for free. God works in mysterious ways. I need to call her and chat but things have been crazy around here. Carrie if you are reading this I havent forgotten you. I will call you tomorrow!

Makily is still gaining weight and while I am still struggling to get her feeds on a "routine" schedule it is going rather well.

Please sign the guestbook so we know you were here!

Saturday, March 4, 2006 3:47 PM CST

Things are still WONDERFUL here. Makily is excelling in speech and eating more. She enjoys cheese slices now. I pinch a piece off and ball it up tiny and she seems to really enjoy it.

I am in a VERY long battle with the insurance company to get Makily's stander. I won't go into details here but it's been rough and VERY FRUSTRATING. I am not giving up though and I will harrass them until I get what Makily needs. They are messing with the WRONG MAMMA!

I posted some new pictures and a video of Makily today in her swing. SHE LOVES IT and I hope to get her a bigger one that will accomodate her size as she gets older. I really enjoyed swinging with her at the boundless park and it would be aweseme to get a swing like that for here at the house. I need to research it some and I am sure it's pricey but we'll see.

She has gained some weight! HOORAY. We weighed her today on the scale at home and she was 18 lbs.....she had gotten down to 16 so I am happy with where she is at. I have her up to full feeds and will continue to increase her intake as long as she tolerates it though. She seems to be able to take a higher volume during the day time over an hours time rather than increasing at night. I bumped her from 90 cc to 95 cc/hr last night and it gave her diarrhea. This is the second time that's happened so I will try bumping up daytime feeds instead and see how that goes.

Makily has a gastric emptying study next week. She was supposed to have a swallow study Friday but after speaking with Elon (SLP) she does not feel it is a good idea right now. Makily does still have swallowing issues and we know she needs more work. Maybe we will do it in 6 months but right now we feel it's best to keep practicing before jumping to conclusions one way or the other. I trust Elon and think she is right. The gastric emptying study is just to make sure things are moving along in her tummy like they should. I almost cancelled this one as it was ordered when Makily's g tube was leaking and it's stopped. BUT I feel like it's good to have something to refer back to just in case so I am keeping the appointment. I am not looking forward to it as Makily has to be strapped down for it and my girl does not like to be held down in any way (post traumatic stress from all the other stuff she has been through). Hopefully she will just fall asleep and not mind at all.

Please sign the guestbook so we know you were here!

Tuesday, February 28, 2006 8:35 PM CST

Things are WELL in the Caldwell household tonight! WHOOO HOOO!

Makily went back to OT today with Mr. Jimmy, I am glad to say Jimmy is feeling much better and didnt have any sicky germs left! Makily tried playing opossum (how do you spell that dang word?) with him as soon as we walked in the room. She kept "pretending" she was asleep and every now and then she would open her eyes to see if he was still there..it was quite funny....her "sleepy" game didnt work with Jimmy and he made her work out anyway! She did pretty good but we are still trying to get this kid to push up on her tiny spaghetti arms. One day...one day. Because Jimmy gave me such a hard time today for announcing on Makily's web page that he was sick last week, I have decided to post a pic of him that I took back in November with Makily.......Here it is!

Threaten Makily with 5 days of therapy a week now will you!!?!? REVENGE IS SWEET! Mwahahahahaha!
Okay seriously Mr. Jimmy is a great therapist and we have a friendly banter back and forth, he is a Yankee so well you know how "they" are. JUST KIDDING!!!

Whe bought Makily a infant swing for the back yard and she loooves it. Me and Daddy swang her for a while yesterday and she smiled and giggled the whole time. It's so nice to see her so happy.

I have started planning Makily's 2nd birthday party. I am so excited about it and can't wait! I sometimes can't believe that Makily will be 2 years old in a month. It's gone by so slow yet so fast. She has come SO FAR from that tiny baby laying in the NICU on a ventilator. We have been through so much and she continues to amaze me with all the things she has overcome.

Friday, February 24, 2006 10:15 AM CST

Could it be 2 GOOD updates in a row? YES IT COULD!!

Makily is doing great. The leaking has stopped completely. She is my happy girl again and I feel like we have our life back. PRAISE THE LORD!

We started back to all of Makily's therapies this week. Well except OT because Jimmy had a cold and I don't let Makily around ANYONE that is sick. She is doing AMAZING things in speech and Elon and I are so proud at the leaps and bounds she is making. This week in therapy she ate some of a brownie, a ding dong, some Dorito, and drank a few sips of Apple/Grape juice with rice cereal in it to give it some texture. She did SO GREAT! I also bought this candy called a "Squeeze Pop". It's a gel-like lolly pop in a tube....sounds and looks gross but I figured it would be good for therapy. They only had sour flavors. It was great fun watching Makily make ewww faces when we gave her some. She didnt cry so I guess she liked it!! The strong taste is good for the sensory issues in her mouth.

I have her up to full feeds via the pump and she is PILING back on weight. I can no longer see her ribs and that is so nice. What has made me the happiest is to see Makily happy. She is my happy girl again and I missed that so much. She was so miserable she wouldnt smile or laugh. Now that is all she does at me and it never gets old. Every smile and laugh takes my breath away.

I wanted to again say a special Thank You to Dr. Pierre. If it was not for you figuring out that the acid was causing the leaking Makily would have an NG tube right now and would be having ANOTHER surgery next month for a new G tube. You know how scary that is for me and how risky it is for her. Thank you for all you have done for us and for loving my daughter. I will never be able to express how grateful we are to you. God has used you as a tool so many times in our family's life the past few years and I thank you for listening to him and being there for us. I don't consider you just Makily's pediatrician but my friend and a part of our family. Thank you again.
Love and lots of slobbery kisses from Makily.

Sunday, February 19, 2006 10:40 PM CST

Things are going VERY WELL!

Makily is still on her Zantac and Reglan. After many phone calls and frustration I DID finally get Makily's new medication that was to replace her Zantac. Originally the gastro doc wanted her on Prevacid but insurance would not cover it so they substituted the generic version of Prilosec instead. Then the insurance company refused to pay for more than one pill a day when the script is written for two. A pre-auth is needed in order for Makily to have 2 a day. In the mean time I just told them to fill it for what they would pay for and that I would deal with it later because Makily needed her meds! It's a capsule and I was told to break it open and dissolve in some water than put it in her G tube. WHAT A JOKE! The capsule contain these little "balls" and not a powder, they stick to the sides of the syringe and the G tube. I cannott for the life of me figure out how I am supposed to get this into her. I have a few more tricks up my sleeves that I will try but I will be calling the doctor tomorrow to find out what we should do. In the meantime I am continuing with the original meds. I am telling you it was an awful day for us as Makily was in misery and I was on my last nerve with all the many phone calls I had to make just to get a med that we can't even get into her. I am just thankful that the meds we DO have are working so I shouldnt complain really.

******THE G TUBE LEAKING HAS ALL BUT STOPPPED!!!!!******

Her stomach looks AMAZINGLY WELL. I can tell if I am late on her meds because Makily gets fussy so we are staying on top of it and I believe it is fixing our leaking issue!

On an even happier note Makily had the most WONDERFUL day yesterday. She woke up in a GREAT mood and was smiling and giggling. She went to a birthday party for her best friend Cameron who is now 2 years old. It was held at the park on baseline on the greenway. Makily enjoyed "eating" birthday cake AND icing. She didnt fight me at all and relaly seemed to like the taste. She got it all over her little face and it was soo cute. I will post pics of that this week. I walked over to the playground area just to see if there was anything Makily would be able to do. They had some infant swings there and so I thought I would put her in it and see how she did. She LOOOVED IT. I got all kinds of giggles and smiles while I was swinging her. It's been over a month since I have seen her happy and having a good time like that, this brought on many happy tears from me! They also had a different type of swing that I have never seen before. It's larger sized for older children that are disabled. It's fully supportive. I got in it and put Makily on my lap and we swang for a long time together. She was so happy and peaceful. I layed her on my chest after a while and she stared up at me with those BEAUTIFUL blue eyes of hers and I sang our song. (you are my sunshine). I will never forget that moment or that day. These are the things I dreamed of before I actually became a mother. Simple things like swinging with my child and taking walks with them. It was a "normal" moment and I cherished EVERY second of it. Not once was I questioned about Makily or her disabilities or issues yesterday. I was able to spend quality time with my child without the many explanations that seem to wear me out by the end of the day. I cannott tell you what that did for me, but more importantly for Makily. She was happy, content and having fun......it couldnt have been a more perfect day unless Daddy would have been there. Unfortunately he was at work. We do plan on going back to that park with her this week.

She is also back to her full feeding routine as of tonight! HOOOORAY! I am so thrilled that she is eating so well and I am finally getting the calories in her that she DESPERATELY needs. It's a huge relief to me to know that her body is finally able to tolerate eating again. She was doing so bad before I was really starting to worry about what was going to happen. I thank God every day for watching over her and also for all the many prayers that were sent our way. Please keep the prayers coming as we can ALWAYS use them.

I will post new pics this week some time.

Tuesday, February 14, 2006 2:14 PM CST

Last night Dr. Pierre called me at about 8:30...she was still at the office!! She was calling to let me know she has spoken with the gastro doctor at Nemours herself and that she had made an appointment for us for today at 11:00.

So we went to the appointment. I went over all of the problems Makily has been having and her history with the doctor and his nurse. They questioned why Makily is still on Alimentum and I explained that we have had a rough time weaning her from it in the past. The last time we tried she had terrible gas with constipation and/or diarrhea and cramping. They told me part of Makily's weight issue is because she is still on baby formula (I already knew this). They didnt give me any suggestions on how to get her on a higher calorie formula BUT they don't want to change it right now anyway. Once we get the leaking under control then we will deal with the fact that she is so small and get her on a high calorie formula. Today at the appointment she weighed 16 lbs 8 oz and was 29 inches long. She hasnt been on the "normal" growth charts for a long time but she has even fallen off of "her normal" growth curve. This was very hard to hear even though I knew it already.

I informed the doctor that alot of children with Emanuel Syndrome have severe gastro issues and one of which is gut malrotation. In fact I have a VERY MILD form of it and was diagnosed with it when I was 3 months old. I have often wondered if Makily has it also. The doctor is going to do many tests on Makily. She is having an upper GI, barium swallow, gastric emptying study and a test to look for gut malrotation. They will be looking to see if her Nissen is still in tact as well as if her pyloroplasty is doing it's job or causing more problems.

As for the G tube leaking and acid problems he has advised me to stop the Zantac and start her on Prevacid. This is a stronger medication and she will take it in addition to the Reglan Dr. Pierre already prescribed. He also wants us to start putting bactroban on her G tube site along with the Cholestymine we are using. This will help with the irritation and encourage the site to heal.

I am hopeful that the Prevacid will help with the leaking and acid problems. We may not even be able to get all the testing done for 4-6 weeks as he said Arnold Palmer Radiology schedules it all and they are "really backed up". I am praying that they get her in quickly AND that the Prevacid will help OR STOP the leaking altogether.

Please keep praying for my girl.

Monday, February 13, 2006 7:34 AM

Well I am sorry to report that Makily's G tube has started leaking again. It started slowly on Saturday night and has progressively gotten worse. Makily is in great spirits and that really helps alot. I get down when I see that she is sad and in pain. I plan calling Dr. Pierre and Makily's surgeon to see what the next step is.

I do think that Dr. Pierre was on to something when she suggested that Makily has an excessive amount of stomach acid. The Zantac and Reglan seem to help and calm her when we give it. We have been giving it around the clock though and she is still leaking.

**UPDATE 9:43AM**
I just spoke with Dr. Pierre she feels (and I agree) that the stomach acid is eating away at the inside lining of Makily's stoma. She does calm with the meds. Dr. Pierre is calling GASTRO at Nemours to see if they can get us in today. I want to have EVERY GI test they can possibly do on her to see what is causing this. I really hope they can find whatever is causing this and we can avoid taking out the G tube and starting all over again with it. Please pray for us.

Saturday, February 11, 2006 7:58 AM CST

This will be a long update.

So yesterday I spoke with Dr. Pierre she agreed that since the swelling had gone down the 16fr no longer fit and so Makily needed the 18fr. She said she would put it in for me but to call and see what the surgeon wanted to do and we would go from there.

Dr. Levy was not in but I spoke with his Nurse Practitioner who was VERY NICE. She agreed with us and advised to put in the 18fr button. When I told her my pediatrician would do it she was surprised. She said most peds won't mess with G tubes but if Dr. Pierre was comfortable and willing then so were they. I am SO THANKFUL TO DR. PIERRE.

So I took Makily in yesterday at 1:00. Dr. Pierre came in and looked at the site and was upset with how raw and irritated it is. When she took the 16fr out a large amount of stomach acid spurted out of Makily's stoma. This caused the area to bleed some so Dr. Pierre had to cauterize it a little. Then she put the 18fr button in and while there was some resistence it went in. This was all painful and horrible for Makily but she recovered quickly when I picked her up. She even snuggled Dr. Pierre a little before we left.

Dr. Pierre and I discussed it and she has a theory of why the leaking keeps happening. She feels that the amount of stomach acid that came out when she removed the 16fr button was excessive. Makily had not eaten in over 5 hours and so she should not have had that much acid floating around in her tummy like that. Dr. Pierre feels that maybe the acid is flushing up into the stoma and irritating it....after a while it breaks down the track and then the leaking starts.
So we have started Makily on Zantac and Reglan both 3 times a day to keep things moving in her tummy and reduce the amount of acid in there.
Dr. Pierre also prescribed a cream for the area around her G tube.

********THE GOOD NEWS?*********

Makily slept through the night, she ate all night long and this morning when we got up...................


*******HER BELLY WAS DRY AND SHE WAS NOT LEAKING********


So I am praying we have solved the mystery and can control this issue with medication. Makily is a much happier kid today and I am so relieved. I really believe we have this problem solved.

Thanks to everyone who has been praying for Makily and our family. It's been a rough 3 weeks and I am so happy things are finally looking up.

Friday, February 10, 2006 8:18 AM CST

Well the button came yesterday at about 2pm. I put it in and we came home. I figured Makily would be most comfortable here and I wanted to make sure I did everything I knew to make her the happiest to prevent this thing from leaking.

She ate all night last night for a total of 10 hours which was 21 ounces. I was hopeful this morning when I woke up and realized she had eaten all night and not woken up fussy. When I checked her tummy the gauze was wet with stomach acid and formula. Somehow though Makily managed to smile the biggest grin at me. I think she knew I needed it. I got her up and bathed her. We did our after bath snuggle time, I went put her down and she started screaming, I heard a "leaking spurting" noise, I looked at her G tube and I watched as the stomach acid leaked out and slide down Makily's tummy. I put balmex and gauze on it and rocked her. She remained fussy. I could not put her down, she screamed either way but was worse if I put her down.

I called Dr. Pierre's office and am awaiting a call from her to find out what her opinion is. I don't like making decisions without first getting her thoughts. I am pretty sure I know what Dr. Levy (the surgeon) will want to do, I just want to make sure we are all on the same page though before Allen and I decide on what to do.

Makily continued to scream and shake in pain. I broke down and gave her a dose of Tylenol with Codeine, took the ALREADY wet gauze off her stomach, dowsed the area with Lidocaine viscous, put new dry gauze on it with some balmex and rocked her some more. She is now quietly watching Dora the Explorer.

I am afraid the "solution" to this problem is going to be to remove the G tube altogether and let it heal. In the meantime Makily will have to have an NG tube in place. After her tummy is healed we would have to re-do the G tube.

I am going to talk to Dr. Piere today about putting in the size 18fr button instead. I am grasping at straws here. As much as I don't want to force yet another larger sized button into Makily's tummy, I also DO NOT want to have to put her through surgery again. Anytime Makily goes under anesthesia is a huge risk and I am always concerned about her ability to come off the ventilator. My thoughts are that maybe since the swelling has gone down the stoma opening has enlarged and needs the 18fr instead of the 16fr now. If she has the G tube done over it will create more scar tissue and Makily already has had 3 abdominal surgeries.....another G tube would make 4. Just too much in my opinion.

I will update again when I can.

Thursday, February 9, 2006 12:56 AM CST

We still do not have a new button. After much frustration and a zillion phone calls Tues, Wed. AND today I am assured I will have it TODAY. In the meantime Makily's tummy IS leaking. I do not know if it is because the button she has in has a broken balloon or if it's just leaking. I am praying once we get the new button that it will stop leaking. If the new button does not stop the leaking I am not sure what the next step will be to solve this ongoing problem. She has been rather cranky and unhappy. I don't blame her.

I stayed over at my Nanny's house last night and most likely will stay at my parents house tonight. I am really stressed and it's nice to have family around to help me.

Thanks to Elon for praying with me and listening this morning. I really needed someone to vent to and I am so sorry I unloaded on you. We are very lucky to have you as a friend.

Please keep praying for my little angel.

Tuesday, February 7, 2006 10:44 AM CST

We are home.

We got to the surgeon's office at 9:30. Makily slept the entire way there. When he took the gauze off her tummy he said "Aww, that looks like it really hurts".....Makily cried, I think she knew what was coming.

I had brought a size 16fr, and 18fr button. The 18 is what she has had in. He said the opening was smaller so he would put in the 16fr. Well the hole had closed up ALOT in 9 hours so when he tried the 16 even it was too big and wouldnt go. Poor Makily screamed. He told me he would have to dilate the opening and I honestly felt nauseated. The dilators are literally metal rods....one end is a little thicker than the other and they go up in size. The goal is to put the dilator in the stoma and stretch it out that way. Allen stood outside the door. Dr. Levy had to use 4 of the dilators, putting it in then taking it out and going to the next size up. My baby screamed so hard and had the look of sheer terror on her face. The surgeon kept saying "i'm so sorry, Makily I know it hurts". I just held her hands and cried with her. After the 4th time he got the stoma open enough to put the button in. I know it was incredibly painful for Makily and I HATE seeing that look on her face. Nothing makes me feel more worthless and helpless than seeing her scream in pain like that knowing there aint a damn thing I can do to make it stop. I wonder if she wonders why I keep letting people do this to her. I am having a rough time dealing with all of this today. Life is so unfair sometimes and I hate it that Makily had to suffer like that. I can't even imagine how much it hurt.

We havent fed her yet but it is not leaking right now. Please pray that this has worked.

**update 5PM....We are feeding Makily, it's not leaking BUT the balloon on the button has now burst and I have the button taped in. I cannott believe this.......I really can't...if Makily didnt have bad luck the poor kid wouldnt have any luck at all. I have an order in to get another size 16fr button overnighted to me. We didnt have a spare 16fr because she was in an 18 up until today.....please keep praying that we all don't go crazy in this house.**

Monday, February 6, 2006 6:46 PM CST

Makily's G tube is leaking again.

It started Friday and has progressively gotten worse. It had stopped leaking and then Makily got rotavirus and it seems like that or the weight loss from it triggered the leaking. I took it out for 3 hours today and then Dr. Pierre put it back in. This is what the surgeon had done the last time to fix the leaking problem....and it worked. For some reason it has not worked this time and once again Makily is miserable. She has been crying on and off all day and trying to claw at her stomach where the button is. She was so hysterical an hour ago Allen and I broke down and gave her a dose of Tylenol with Codeine. She was crying and shaking she was in so much pain. I am so frustrated and just don't know what to do anymore. I called Makily's surgeon and told him what has been going on the last week and he has advised to remove the G tube at midnight and to meet him at his office at 9:30am.

I have stopped trying to figure out why this keeps happening or what is causing this chronic leaking. This seems like a very rare problem because I haven't been able to find another child having severe leaking issues like Makily's.

I will update when I can and if I cannott I will have my sister update for me.

Friday, February 3, 2006 1:04 AM CST

Well I am proud to say that Miss Makily is doing VERY WELL. She stopped having diarrhea Wednesday morning and hasnt gone poop since! (hoping I won't have a different issue now!) We went to Dr. Pierre's office and saw Dr. Seva and she said all is well. Makily is back up to 17 lbs already and isnt even at full feeds yet! I am so proud of her and she has really bounced back.

After Makily's appt I took her to the park near our house. Makily loves being outside especially when it's windy. She gets a really sweet look on her face when the wind blows. I took several pics and they are on the site now. It was nice Mommy and Me time and I enjoyed it as did Stinky. Before we left she I was standing by the car swaying with her in my arms and the wind was blowing and she just kept chuckling with her eyes closed. I don't know if it felt funny or not but for some reason it made her chuckle which made me cry. She is such a joy and blessing and I know I say it all the time, but she just has a sweet, innocent spirit. Yes I am a huge sap.

Thanks for keeping up with us.

Wednesday, February 1, 2006 2:44 AM CST

Well we are home. Got home about 6pm last night. Makily tolerated both feeds well at the hospital and didnt retch with either one. She still has pretty nasty diarrhea but that is to be expected with Rotavirus. She has really perked up alot since Monday morning and was so funny before we left the hospital. I had wrapped a balloon around her ankle and she was cooing and going crazy trying to get it. Her Pawpa came up to the hospital as soon as he got off work and sat with us and then helped us get everything packed in the car to go home. It's 3:45am here right now and I am wide awake and can't figure out why. My sleeping habits are so off. Makily is sound asleep and resting peacefully though and that is what matters.

I have cancelled all of Makily's therapies for the week so she can gain some weight back hopefully and get her strength back up. I also don't want her exposing any other children to this, it's a nasty virus. They say that usually Rotavirus lasts up to 9 days and today is day 8 so I am hoping that we are pretty much done with this.....Makily NEVER does anything by the book though but I am hopeful that by the weekend the diarrhea will be gone.

Thank you for all the guestbook entries, calls, flowers, and such. It's so nice to know there are so many that love our little girl and are praying for her.

Tuesday, January 31, 2006 7:27 AM CST

Just wanted to do a quick update this morning. I came home to take a shower and grab some clothes. Makily's GG (great grandma) is with her right now. She is doing better this morning, she still is paler than usual and having diarrhea but she looks and acts alot better. She started to scare me late Sunday night into early Monday morning. She would not smile or do anything, she was lethargic, her eyes were so dark and sunken in and she was like a little rag doll. Thankfully once we got some of the IV fluids going she perked up within an hour and started to "talk" again. Some of her elctrolyte levels were wacky along with her H&H being high....both are from dedydration.

Her and I both slept well last night (there is a BED in the room for me hooray!). She woke up twice last night both times just wanting me to hold her because as soon as I sat down with her she fell right back asleep. They are going to try feeding her today and as long as she tolerates that well we can go home this evening. The nurses and staff at Munroe have impressed me and been so attentive and very friendly. I havent had to ask for anything twice.

Please keep praying for my girl.....I thought I would include a couple of pics of her sleeping this morning. She is a little puffy from the fluids but other than that looking much better.

Monday, January 30, 2006 5:49 PM CST

Hello--This is Aunty Deborah updating for Patricia, Allen, and Makily. Makily is in the hospital tonight. She was admitted today around 10:00 AM to MRMC. She is really dehydrated, and has lost some weight from all the diarrhea, and we have confirmed that she has Rotavirus. They have started an IV and are giving her fluids, and she is not eating for now to let her belly rest. Dr Pierre thinks she may have to stay n the hospital for 2-4 days to get her rehydrated, and back on her normal feedings. Trish says that despite being so sick, and looking like she has been through hell and back, that the little stinker is actually smiling and cooing, and watching SpongeBob when she is awake, so she is still in good spirits despite feeling bad. Please keep them in your prayers that Makily will get better quick so she can come home!! She is in room 219 on pediatrics. I'll update again when I get more news!!

Sunday, January 29, 2006 12:03 AM CST

It's strange I updated last night and now the update has disapeared into NEVER NEVER LAND...UGH!!

Makily went to see Dr. Pierre yesterday morning at 10:30. Dr. Pierre does believe this IS a stomach virus but one of the more serious, longer lasting ones. Specifically Adenovirus or Rotavirus. I have researched both and I think it's Adenovirus (click on the word and it will take you to a link about it). She had the respiratory issue with coughing, runny nose, cold like symptoms, then the gastrointestinal symptoms and now one of her eyes is looking pretty red.

Dr. Pierre sent us home with containers to collect a "sample". I won't even describe what I had to do to get the poop as since she has diarrhea it's like water right now. Let's just say it was really gross. They will send it off and culture it to find out what virus Makily has. This way we will know how long to expect this and what exactly is going on. If it is Rotavirus or Adenovirus Dr. Pierre explained that this can last for another 2-3 weeks.

Last time Makily was weighed in the office she was 17 lbs 10 oz. She is now down to 16 lbs. 13 oz....and it shows. When I picked her up last night, I felt her ribs and it broke my heart. She can't afford to loose any weight...my poor little peanut.

Dr. Pierre advised us to start mixing Makily's formula with Gatorade instead of water. This will give her the electrolytes she needs in addition to the calories she needs REALLY needs. We are giving her 3.5 oz every 3 hours over 15 minutes and while she is still retching and having terrible diarrhea...we know she is still hydrated and getting the calories she needs.

There is no "cure" for either one of these viruses, you just treat the symptoms and watch for signs of dehydration. Makily is still peeing and slobbery so we now she is well hydrated right now.

Even though she has lost weight, is nauseated, retching, having massive diarrhea and a nasty cough....she is still happy as a clam and in good spirits. We are very blessed that Makily handles being sick with such grace and strength.

Please keep my baby girl in your prayers.

Saturday, January 28, 2006 0:24 AM CST

I just want to ask for prayers for Makily tonight. She has been retching and dumping all week. At first I thought it was just a stomach bug since she had only had a small amount of formula Tuesday evening when this started. Usually Makily ONLY retches if she is OVERFULL, so I assumed her tummy was upset.

**I have had a few ask me what retching is so I will give a short explanation. Makily had a Nissen Fundoplication in 2004 and it binds the esophagus tightly to prevent reflux, when Makily needs to throw up the Nissen prevents her from doing this, so she heaves and retches, it's awful to watch and terrible for her.**

I thought things were getting better today. We had been giving small amounts of Pedialyte (1/2 oz) per hour and she was handling that well most of the day. We switched to formula this afternoon and started out at 5 cc's an hour and worked up to 25cc's.....she dumped and then started retching again. If this were a stomach bug I don't think it would be lasting this long. I don't know but I am very upset because she has gone since Tuesday night only taking Pedialyte or Gatorade and VERY minute amounts of formula. That is 3 days and when you are only 16-17 lbs and almost 2 years old, you can't afford to loose one single ounce.

I don't know what is going on with her. The only correlation I can see is that the first time Makily's G tube leaked so bad, she had started dumping and retching right around that same time. Well if you remember we just had a major G tube leaking issue and now she is dumping and retching like crazy. It seems like for some reason the two problems go hand in hand with Makily. I am really upset and I just don't know what to do.

Allen and I are both very frustrated with all this and we got into an argument tonight........I have been in denial all week saying and praying that this is just a stomach bug. After she started retching tonight I came to the realization that it's not getting better and if it was just a stomach bug it would/should be getting better by now. Allen doesnt want it to be something more serious (neither do I) so we got in a fight about it. (isnt it crazy how when you have a special needs kid you can fight about something YOU BOTH agree on JUST BECAUSE OF STRESS?) We both calmed down and Allen explained that he is just frustrated and is afraid of what might be wrong. I agree with him.

If I had to guess I would say that her Nissen Fundoplication has "come loose". This is the surgery where her esophagus was "binded" so she can't reflux.......Makily has severe reflux and the reason she needed the surgery is because the reflux is so bad that it can cause her to aspirate on it. THE LAST THING WE NEED IS ASPIRATION PNEUMONIA. I am hoping I am wrong about this and it's possible I am because Makily has not had anything come up, she just tries really hard to puke. They say that rigorous retching can cause the Nissen to "loosen" and she did have alot of retching when the G tube was leaking. I don't know what if anything is done to fix this, I have heard some doctors say they will not re-do a Nissen.
I AM PRAYING I AM WRONG AND THAT IT'S SOMETHING ELSE.

We will be calling Dr. Pierre in the morning and trying to get an appointment to be seen.

Please keep Makily in your prayers. I know she is dropping weight and it scares me.

***Thought I would come back and add a few pics of Stinky tonight after her bath. (sorry if they are big) Even with what is going on with the retching, dumping, and not being able to eat normally (well normally for her) she still laughs and smiles at us. This little baby has so much strength and can endure pain that would send most adults to their knees. She humbles me more everyday.**

Snuggled into my bath towel!


Mommy's favorite time of the day....after bath snugglin time!


My silly, happy AMAZING baby girl.

Saturday, January 28, 2006 0:24 AM CST

I just want to ask for prayers for Makily tonight. She has been retching and dumping all week. At first I thought it was just a stomach bug since she had only had a small amount of formula Tuesday evening when this started. Usually Makily ONLY retches if she is OVERFULL, so I assumed her tummy was upset.

**I have had a few ask me what retching is so I will give a short explanation. Makily had a Nissen Fundoplication in 2004 and it binds the esophagus tightly to prevent reflux, when Makily needs to throw up the Nissen prevents her from doing this, so she heaves and retches, it's awful to watch and terrible for her.**

I thought things were getting better today. We had been giving small amounts of Pedialyte (1/2 oz) per hour and she was handling that well most of the day. We switched to formula this afternoon and started out at 5 cc's an hour and worked up to 25cc's.....she dumped and then started retching again. If this were a stomach bug I don't think it would be lasting this long. I don't know but I am very upset because she has gone since Tuesday night only taking Pedialyte or Gatorade and VERY minute amounts of formula. That is 3 days and when you are only 16-17 lbs and almost 2 years old, you can't afford to loose one single ounce.

I don't know what is going on with her. The only correlation I can see is that the first time Makily's G tube leaked so bad, she had started dumping and retching right around that same time. Well if you remember we just had a major G tube leaking issue and now she is dumping and retching like crazy. It seems like for some reason the two problems go hand in hand with Makily. I am really upset and I just don't know what to do.

Allen and I are both very frustrated with all this and we got into an argument tonight........I have been in denial all week saying and praying that this is just a stomach bug. After she started retching tonight I came to the realization that it's not getting better and if it was just a stomach bug it would/should be getting better by now. Allen doesnt want it to be something more serious (neither do I) so we got in a fight about it. (isnt it crazy how when you have a special needs kid you can fight about something YOU BOTH agree on JUST BECAUSE OF STRESS?) We both calmed down and Allen explained that he is just frustrated and is afraid of what might be wrong. I agree with him.

If I had to guess I would say that her Nissen Fundoplication has "come loose". This is the surgery where her esophagus was "binded" so she can't reflux.......Makily has severe reflux and the reason she needed the surgery is because the reflux is so bad that it can cause her to aspirate on it. THE LAST THING WE NEED IS ASPIRATION PNEUMONIA. I am hoping I am wrong about this and it's possible I am because Makily has not had anything come up, she just tries really hard to puke. They say that rigorous retching can cause the Nissen to "loosen" and she did have alot of retching when the G tube was leaking. I don't know what if anything is done to fix this, I have heard some doctors say they will not re-do a Nissen.
I AM PRAYING I AM WRONG AND THAT IT'S SOMETHING ELSE.

We will be calling Dr. Pierre in the morning and trying to get an appointment to be seen.

Please keep Makily in your prayers. I know she is dropping weight and it scares me.

***Thought I would come back and add a few pics of Stinky tonight after her bath. (sorry if they are big) Even with what is going on with the retching, dumping, and not being able to eat normally (well normally for her) she still laughs and smiles at us. This little baby has so much strength and can endure pain that would send most adults to their knees. She humbles me more everyday.**

Snuggled into my bath towel!


Mommy's favorite time of the day....after bath snugglin time!


My silly, happy AMAZING baby girl.

Wednesday, January 25, 2006 10:04 PM CST

Makily has been sick the past week. I have been giving her cough medicine and breathing treatments and that part of her illness seems to have improved. Now I believe she has a stomach virus. Nice. Last night she started retching after only eating for an hour. I know she wasnt too full because she goes all night long eating and doesnt retch. She did it on and off and then about a half hour later she has MASSIVE diarrhea. I am talking yellow water. She has been doing that all day today so I am just giving her pedialyte for now and then tomorrow will start back with formula. Her G tube also leaked some yellow fluid and of course my heart stopped but it has been fine today so I am holding my breath and hoping that was a one time deal.

After many phone calls and MUCH frustration I finally have been successfull in getting the insurance to pay for Makily's formula! HOOOOOOOORAY! This is a big thing for us as we have been paying out the ying yang for it....money we DO NOT have. I know everyone has to pay to feed their kid but spending $500 a month when your child is not even 2 years old and strictly on a liquid diet is kinda out of the ordinary. So they will now be covering 80f the cost, that is a BIG help to Allen and I.

I plan on calling the stander people to find out what the heck is going on in the morning. I havent heard anything since we had her measured for it. It's been 2-3 months. *sigh* More insurance issues and red tape is most likely the hold up. She is doing well with her splints on and being in the walker so that I think will help get her prepared for the stander......I still havent come to terms with it but that's another story.

One exciting thing happened this week. Chromosome 22 Central (the website started by a mom of a child with Emanuel Syndrome) is having their conference in Niagra Falls this year. It was originally going to be in Florida but the owner (whom lives in Canada) would like to attend but had to make the choice between adopting another little one from China or making a trek all the way to Florida. She chose to adopt another little one (smart choice if you ask me) so they moved to conference closer to her. I desperately want to go and plan to as long as finances allow. I think if we get the tickets early enough it won't be to terribly expensive. It will be the weekend of my birthday (Jul 21-23). I thought that was neat! I will keep you updated on if we decide to go!

Friday, January 20, 2006 11:46 PM CST

We took Makily to see the plastic surgeon this week. It was a very quick and boring appt. He just needed to look in Makily's mouth and make sure her cleft was still closed and had healed well. While we were in the room waiting I picked Makily up and her button just fell right out onto my foot. I started to panic a little and then reminded myself how many times I have put these things back in and to calm down. I had brought a spare with us and Allen talked to Makily and held her arms out of the way while I put it in...Makily fussed a litte but recovered quickly. I tested the button that had fallen out and when I injected the water into the balloon it squirted right out the side of the balloon.....$100 for a button that lasted what....3 weeks....GREAT. Other than that everything went great and we have to go see the "cleft clinic team" in 4 months so they can evaluate her teeth, jaw growth, etc etc etc....I am sure Makily will love that....NOT!
I am waiting for a referrel to neurology and gastro. The neurologist that Dr. Pierre wants Makily to see is in Tampa...the referrel is done we are just waiting on the appt. She is still doing that weird shaky thing sometimes and some 11/22 kids have seizure disorders and or activity so it's just something we need to check. As far as gastro I ADORED Makily's gastro doctor in Gainesville but since we no longer want to go back to Shands we can't go to him. We need to establish with one in Orlando and so we are waiting for that.
As for the heart surgery that should be done sometime this year.....I will shamefully admit I have not called the cardiologist back about it. Really for a few reasons. One is that they said IT IS NOT an urgent surgery that it just should be done by the time she is 3ish. Two is because they were really worried that she was too little back then because she was right on the borderline size wise. Well she has LOST weight since then due to the AWFUL g tube leaking issue we just had so I know they won't do it now since she smaller now than she was then.

Tomorrow we plan on taking Makily to the park and doing another one of our famous "photo shoots" with her. Ha ha, our "photo shoots" consist of Makily rasberrying at me while I scream at Allen to wipe the slobber so I can get a good picture....then when things get just right for ME Makily will start crying or make a ANGRY face right as I snap the picture....this will be interesting....LOL No really she has been EXTRA happy this week and so I am hoping they we will get some real good smiley, happy girl shots...I'll post them here if they turn out well...I am sure they will!

Please keep all the guest book entries coming as they are very encouraging. It's so wonderful to know who is reading up on my stinker and that so many are praying for her.
One small prayer request....Makily is still not back up to full feeds. I got her there once and then she retched HORRIBLY to the point her and I were BOTH crying. I ended up resorting to attaching the "big tube" to her button to drain some out of her stomach in the hopes that would stop her retches. I can tell when I hold her she has lost weight and honestly I don't even want to know how much. Please pray that she will be able to get back up to what she needs to be at calorie wise. She is such a little peanut of a kid which doesnt bother me but she is STILL in an infant car seat. She is not 20 lbs yet and we cannott move her up....BUT she is getting so long her little feet are dangling off the end of the carseat.
Thanks for following along with our family.
The Caldwells
Allen, Trish and little Makily

Saturday, January 14, 2006 2:09 AM CST

It's 3AM here and I am wide awake....mostly because Allen is snoring like a bear in the other room! haha.

I figured I would update. Things are good here. Makily went back to all of her therapies this week for the first time since the holidays and her G tube leaking problem. She did fairly well. She has started to eat fruit poofies more and while messy and slobbery she tends to enjoy those.

Her G tube hasnt been leaking very much. Only VERY minor amounts that I am not concerned about. I slowly was working her back up to her full feeds (90cc/hr during the night at 150cc over 30 mins every 3-4 hrs). Well she woke up retching so hard Thursday morning I FELT ABSOLUTELY HORRIBLE. She couldnt stop and was pushing so hard that her G tube WAS leaking. We backed off again on her feeds, I supposed I wasnt working her up slow enough so we have slowed down and will just watch Makily and take cue's from her.

We have an appt to see the plastic surgeon for a check up next week. I am sure all is fine. They will schedule her to see an orthodontist and possibly a dentist to check the placement of her teeth/jaw etc. etc. Usually kids with pierre robin sequence have problems with that. Makily only has 3 bottem teeth right now though so there's not much to really look at right now!

That's all for now, thanks for keeping up with our family and for all the prayers. We appreciate each one.

Saturday, January 7, 2006 7:52 AM CST

I am breathing a cautious yet much needed sigh of relief today.........

I didnt sleep at all Thursday night. At 5:30am we got Makily up bathed her, did her hair and then took her button out. She cried a little but it went well. We got to APH Express Care at 10:00am. Dr. Levy came in and I took the gauze off Makily's tummy. When he looked at the stoma he said "she closes kinda quick". I guess it looked smaller than he had anticipated...which of course made me nervous. I saw the nurse bring in a sterile pack of metal dilators and my stomach started turning. I won't even describe what's done with those and PRAISE GOD he didnt have to use them on Makily this time. He had to force it pretty hard but he put Makily's button back in. She was not impressed or pleased in the least.
The GOOD NEWS IS THAT it has not leaked since he did this. We even had Makily on a continuous feed last night which is really the true test and SHE IS DRY AND STILL SLEEPING RIGHT NOW AS I TYPE THIS!!!! NO LEAK NO LEAK PRAISE THE LORD NO LEAK! True Joy is waking up to find your baby's tummy gauze is D-R-Y!!!!! I know I have lost it now!
Makily slept all the way home from Orlando yesterday and when she woke up she was the HAPPY, SWEET, GIGGLY girl I am used too. I missed that and it's so good to see her be back to her old self. She feels better and I feel like a HUGE WEIGHT has been lifted off my shoulders and it feels AMAZING! WHOOOOO HOOOOOOO
Thank you for all who have been keeping up and praying for Makily and our family.

Thursday, January 5, 2006 4:24 PM CST

Well we have a plan. Dr. Levy looked at Makily's tummy today. He was very nice and caring. He checked the water level in the balloon and said it was good. He told us we were doing all the right things to keep the area healthy keeping it dry (made me feel good). At 6am in the morning I am going to take Makily's button out and cover the stoma with gauze. Allen, Makily and I will meet Dr. Levy at APH urgent care at 10:00am and he will look at the site. The goal here is to get the hole to "heal" to a certain point and then put the button back in which should make a better seal on it. He said when he sees her at 10 if it's not closed enough to his liking he will wait longer until he feels it's where it should be. He did say that unfortunately this is not a quick and easy fix. This just happens sometimes but not often. As you may guess this will not be a painfree experience for Makily and it breaks my heart for her. I keep telling myself that if it fixes the problem though at least we are getting something good out of it. I do feel better though having a plan and knowing that hopefully this may fix our problem. Makily is retching after every feeding now and so I really want this to work so we can get back to her regular feeding schedule. We can't really reduce the amount we are giving her because it's only 3 ounces at a time. Can you imagine how frustrating it must be for her to gag and try to vomit after EVERY SINGLE FEEDING?

I imagine we may be in Orlando much of tomorrow depending on how things go. I will update when I can. Please pray that this plan works and the button stops leaking.....also pray that it won't be too terribly painful for my baby girl.

Wednesday, January 4, 2006 10:49 PM CST

Makily's G tube is still leaking. The leaking had all but stopped yesterday and I was started to let myself get excited only to realize it started leaking again late last night. We had a terribly rough night last night and day today. She is almost to the point that she is retching after every feeding now and as her mother it breaks my heart to watch. I wish I could help her.
I had another parent suggest that since we had enriched the formula it could be causing the retching so we thinned the formula some and then the leaking started up again. We fix one problem and then make a new one. It's almost like we are juggling whether she should leak constantly, retch with each meal, have massive diarrhea, or a combination of 2 or 3 of these. If you ask me all of these choices suck. We have an appointment with her surgeon tomorrow morning at 10:30. Please pray that he will have some type of solution and be caring and understanding.

Sunday, January 1, 2006 11:51 PM CST

Well we're still leaking here.....with no sign of it letting up. It's a constant battle getting enough calories in her per day. She cannott be fed through the pump AT ALL....it leaks the ENTIRE time the pump is going, no matter how much you slow it down. We are doing strictly bolus feeds every 2-3 hours. Allen had the idea of mixing her formula with double the calories so instead of it having 20/cal. per oz it has 40. This way when we give her 3 oz it's really the equivalent of 6 oz. Our formula bill a month is ridculous (as insurance does not cover it BUT it is "special" formula and costs $25/can). So since we are using twice as much....we will be paying twice as much....sigh.....oh well we will do whatever we need to do. The hope is that it either just stops leaking and we can do regular feeds with her again OR that when we go and see Dr. Levy this week he will have some type of solution to stop all the leaking. Oh I pray he knows just what to do to stop this.
On the bright side of things it's nice to see Makily being able to tolerate bolus feeds without having severe issues. For those of you that don't know the difference...the pump slowly pumps her food into her tummy over an hour or more.....while when you bolus feed it goes in over 15-20 mins....I control how slow or fast by gravity. She has had a few retching episodes because her tummy has gotten a bit too full but as far as diarrhea I think I have it under control now, she has only "dumped" once since all this started.
Her tummy continues to be red and irritated but we are staying on top of it. I mixed the tube of lidocaine viscous I had left over from last year and bactroban and put them in the fridge. When we change the gauze on Makily's belly we apply that mixture and it seems to really numb and soothe the area. It still looks fairly good considering the fact she has had bile/stomach acid leaking on that side for over a week now.
Thought I would include a couple of pics of her tonight after her midnight feeding. She is so darn cute and I am proud to say that tonight has started off well. Since this started she has been waking up VERY AGITATED at around 11 and it takes several hours to get her calm enough to go back to sleep....then it usually starts again about 4:30-7:30am....me and Daddy are back to the days of sleeping in shifts again. Honestly though my sleeping habits are so off right now I am wide awake and it's 1 am here.
Anyway here are a few pics of my heart and soul. We have just been letting her sleep naked or just in a onesie as she leaks and drenches whatever she is wearing but tonight I had to put this sleeper on her...it's Eeyore and Auntie Liz bought it for her....IT'S TOO CUTE! ENJOY!

Thursday, December 29, 2005 11:47 PM CST

Makily's button is still leaking. I am doing everything I am told to keep the area as healthy as possible. I am applying bactroban three times a day and changing the gauze on her tummy as soon as I see it's wet. I spoke with Dr. Pierre today and she feels that the size button we put in yesterday is the size Makily needs and if we got up to the next size it will be too big and then that opens an entirely new can of worms that I don't want opened. She suggested I call the surgeon which I did. They explained that sometimes when you go up in size that it will leak for a few days and then stop. I am praying that is what happens. They said to give it until next Wed and if it's still leaking they will see her. I wonder what they will do to fix it.

As for feedings I am trying different things to see what reduces the amount of leaking we are getting. I fed her through the pump continuously last night and the leaking seemed pretty bad. So today I have been feeding her every 2-3 hours via bolus feeds and I have worked her up to 5 ounces. This is the most Makily's tummy has ever been able to take at one time without causing her extreme diarrhea and belly cramps. I am praying that I can continue feeding her this way because while the button still leaks it seems like it isnt leaking as bad with the bolus feeds. It's all a juggling game as far as leaking, nutrition and weight gain with Makily and I feel like I am always jumping through hoops trying to get it right. We had gotten her up to 18 lbs 12 oz and now I know her weight is plummeting. It's very depressing and I am trying not to let it get to me. I gave her some green peas with corn by mouth tonight and she took the first few bites well and then sneezed and she had peas come out her nose. I immediately felt my heart sink when I thought about how she hasnt had food come out her nose since before her palate repair. I am afraid to check her palate and see if there are any openings in it (as this can happen). I convinced myself that your "normal" kid can sneeze food out their nose and that is all it was. I'll keep you posted. Please pray for us as this is weighing on me and I have struggling with the thought of what we will have to deal with if they can't get this leaking to stop. I know that having the tube in her nose again isnt the end of the world but it has it's own issues and problems just as the G tube does.

We are having some other personal issues that I don't want to really go into so please keep our family in your prayers. Pray for patience and stregnth for Allen, myself and especially my sweet angel baby girl. I just want to make this all better and as a parent it's tough to accept the fact that you are utterly helpless in some situations.

Wednesday, December 28, 2005 8:46 PM CST

Sorry I didnt update sooner but it's been a rough day. Makily's button came to the house at about 11:00 and we met Dr. Pierre at her office at 1:00 to change it out. Makily was sleeping when we got there and when Dr. Pierre took out the old button she woke up and started crying. Dr. Pierre had to cauterize the area alot because her stoma was bleeding in places. Makily didnt like this and the poor kid screamed her head off the entire time. We put some ointment on it after the new button was in and then some gauze. Makily fussed for a little while afterwards but once we were in the car she fell asleep. I do have to mention that while the area looks awfully red and raw it's not any where near how bad it gone overnight last year at Shands. It's amazing to me that I can care better for her when it comes to this than the TRAINED PROFESSIONALS could at Shands. (to read about that go here: http://mynewnormal.blogspot.com/2005/12/dumping-retching-g-tubes-mic-key.html) It is so hard for me to forget that night especially now that we are leaking again.

I started feeding her through the pump once we got home and it's still leaking BUT not like it was. I am praying the leaking is just because the area needs to heal some. I am terrified at the thought of what happened last year happening again but I am really trying NOT to think about it. We decided to put her on 24 hour feeds that way she doesnt have alot in her tummy at one time BUT she is still getting the right amount of nutrition that she needs. Please pray with all your might that the area will heal up and the leaking will completely stop within the next few days. I am very worried. I cannott imagine my sweet baby with another tube in her nose again. That presents new problems and I just don't want to go that route. I wish so much she could just eat by mouth.

Tuesday, December 27, 2005 4:12 PM CST

Went to Dr. Pierre today, Makily's button was a horrible mess all night long and continues to leak. Of course none of the home health companies in Ocala had a button in the size up in stock so we have to wait until tomorrow to get the new button in. In the mean time Makily's button continues to leak and worsens when I feed her. I am doing small feeds of 2 oz every 2 hours to reduce the amount of leaking we are getting. I am changing the gauze often and watching it. I am really anxious because of all the problems we had last year with the leaking and not being able to resolve it. I am literally nauseas about all this.
Makily also has a nasty chest cold so on top of feeding every 2 hours, I am doing breathing treatments every 4. I am getting ready to bathe her and then give her a treatment. There is an area on Makily's g tube stoma that is "broken down" and bleeding some so tommorrow when we put the larger button in Dr. Pierre has to cauterize that area. Makily hates all of this and I wish to God I could fix this. Please pray that after the larger button is in that the leaking will stop. That is my fear that Makily will end up in the same mess we were in last year. What a nightmare that was.

Tuesday, December 27, 2005 0:38 AM CST

Makily had a wonderful Christmas and Christmas Eve. She got a TON of presents and had a great day. She started getting congested last night and so I am staying on top of that.

We are having one problem that I was hoping would just resolve itself and well it's not. Her Mic-Key button has been leaking for about a week now. I have done all the things I know to do to get it to stop and at this point nothing is working. Today has been pretty bad and it's alot worse when I feed her. I just gave her a bolus feed instead of through the pump to make sure how much I was getting into her because I was having to start and stop the pump so much because the leaking was getting worse. On top of just leaking clear fluid (stomach acid), it's started to leak bile today and that is what is so acidic. I have been changing the gauze all day long keeping the area dry but it is starting to get red. With all that happened last year with her button and leaking any time this happens I get very anxious about it and I want it fixed ASAP! I am assuming it's leaking because she has outgrown this size button. Makily had a pretty nice growth spurt the last month (gaining almost a pound she is up to 18 lbs 12 oz as of last Tuesday). I think that is why the button is leaking, she has grown out of it. I am calling Dr. Pierre's office first thing in the morning to see if I can get in Makily in. She hasnt been seen for her follow up from the ear tube surgery either so we can kill two birds with one stone this way. I will keep everyone updated. Please say a little prayer that this is something we can easily fix with a new bigger button.

Saturday, December 24, 2005 10:58 PM CST

Had a quick moment and wanted to do a short entry and add some new photos from today. Makily has had a great Christmas Eve and has already recieved MANY WONDERFUL gifts! She is so fortunate to have so many people love her like they do! We spent today with Allen's family at his mom's and exchanged gifts. It was alot of fun and nice to be spending time with family. Then we came home and did a "mini photo" shoot with Makily in front of the tree. The pictures from today she is wearing her santa photo Christmas dress from LAST YEAR! I couldnt believe it fit her BUT IT DID, she looks so cute in it. I have some baking to go do and a pasta salad to make so I will go. Just wanted to show off my GORGEOUS little angel.

Sunday, December 18, 2005 7:06 PM CST

Today we went to Cousin Micah's 3 year birthday party! I can't believe that child is 3! Where has the time gone! He is getting to be such a big boy and is so smart and very vocal. A week or so ago Makily was in her carseat and started to cough, Micah ran over with the most concerned look on his face, patted her on the leg, then looked at me and said "she's okay!" He is so sweet.

Makily is doing well since her ear tube surgery on Wednesday. Her sleeping habits are erratic again which is once again throwing me off. I swear I do not miss those newborn days when we never slept! She never developed a fever (something they said she may do) or needed ANY tylenol OR motrin for pain. What a tough little girl I have. She has been very happy and other than her sleeping being crazy since the surgery I really have no complaints. God has really watched over her. That's really all from the Caldwell household for now. I hope you enjoy all the new pics.

Wednesday, December 14, 2005 5:50 PM CST

MAKILY IS AMAZING!
Today's surgery was a WALK IN THE PARK! The anesthesiologist was great and said that since it's such a quick in and out procedure that she wouldnt even need to be intubated! They just would give her gas via a mask and have what's called an LMA in place to hold her airway open just in case. I told him how she had to be stuck 14 times to get an IV for her last surgery because she is such a hard stick and he said that if he didnt think he could get it in one stick he wouldnt even put her through that. It literally took about 15 minutes. When I went to see her in recovery I could not believe my eyes! She was awake, happy and alert but more importantly...she was tube, wire, IV and monitor free! THIS IS A FIRST FOR MAKILY! I have never held her after a surgery that she didnt have 10 things hooked up to her and that she was screaming her tiny head off. One thing that was really cool is that there was a little girl THE SAME age as Makily that went right after her to get ear tubes put in. Well she was mean and screaming after surgery. Makily kept looking over at her like "what's wrong with you...it's just ear tubes...goooosh!" I was so proud of her, she is such a tough cookie. We left an hour later and she has been happily resting here at home. I havent even had to give her tylenol for pain! You would never know she had surgery this morning. Dr. Moser did say that she had a LARGE amount of fluid in one ear (can't remember which now...ooops!) and the other had some but not a whole lot. He suctioned it all out, popped the tubes in and it was DONE! It's so great to have this over and not looming over my head right before Christmas.
Thank you to EVERYONE who has been praying and thinking of Makily. It's because of God's hand on her and all of the love and prayers from you guys that she is doing so well and has come through this with flying colors. We love you all!

Wednesday, December 14, 2005 5:50 PM CST

MAKILY IS AMAZING!
Today's surgery was a WALK IN THE PARK! The anesthesiologist was great and said that since it's such a quick in and out procedure that she wouldnt even need to be intubated! They just would give her gas via a mask and have what's called an LMA in place to hold her airway open just in case. I told him how she had to be stuck 14 times to get an IV for her last surgery because she is such a hard stick and he said that if he didnt think he could get it in one stick he wouldnt even put her through that. It literally took about 15 minutes. When I went to see her in recovery I could not believe my eyes! She was awake, happy and alert but more importantly...she was tube, wire, IV and monitor free! THIS IS A FIRST FOR MAKILY! I have never held her after a surgery that she didnt have 10 things hooked up to her and that she was screaming her tiny head off. One thing that was really cool is that there was a little girl THE SAME age as Makily that went right after her to get ear tubes put in. Well she was mean and screaming after surgery. Makily kept looking over at her like "what's wrong with you...it's just ear tubes...goooosh!" I was so proud of her, she is such a tough cookie. We left an hour later and she has been happily resting here at home. I havent even had to give her tylenol for pain! You would never know she had surgery this morning. Dr. Moser did say that she had a LARGE amount of fluid in one ear (can't remember which now...ooops!) and the other had some but not a whole lot. He suctioned it all out, popped the tubes in and it was DONE! It's so great to have this over and not looming over my head right before Christmas.
Thank you to EVERYONE who has been praying and thinking of Makily. It's because of God's hand on her and all of the love and prayers from you guys that she is doing so well and has come through this with flying colors. We love you all!

Tuesday, December 13, 2005 11:18 AM CST

Well tomorrow is the day for Makily's ear tube replacement surgery. I am going to ratt myself out here. I have been saying that I am not worried about this surgery....I guess in attempts to convince myself that I am not. Well.....I am worried. You would think that after dealing with this stuff for almost 2 years (has it really been that long?), and watching her have other MORE serious procedures done that I would be a pro at handing Makily over to doctors, knowing they were going to knock her out and do surgery on her. I am going to be honest with myself and say that while I have become a pro at it, it still SUCKS. I find myself wanting to revert back to being a toddler stomping and screaming BUT I DON'T WANT TO, in order to get my way. This would not only look ridiculous but get lots of laughs from everyone around....and more importantly I wouldnt get my way...sigh. Makily needs the tubes so here we go again. Mom, Dad, Allen, myself and Makily will be heading to Orlando tonight and staying at the Hawthorne Suites. Surgery will be early tomorrow morning. I will most likely have Deborah update the site to let everyone know that Makily is okay.
Pray for my baby, I am sure she will be fine, but the mommy in me is once again afraid.

Friday, December 9, 2005 7:30 PM CST

Things are going well in the Caldwell household. We are all geared up for Christmas and have gotten most of our shopping done. Makily is doing better with eating and we actually gave her some fruit poofies this last week and while she seems a little confused at first she is getting the hang of it.
Next Wednesday is Makily's surgery to have the tubes put back in her ears. We (Mom, Dad, me, Allen and Makily) plan on heading up the night before so we can at least try to get a good night's sleep. I am not too concerned about this surgery, really the intubation and Makily's breathing status afterwards is what bothers me the most. She is a trooper and will only be under for a minimal amount of time so that makes things a little easier on her.
I still have not heard back from the cardiologist and will be honest and admit that I havent been to quick to call them myself. Ignorance is bliss right? I am thinking about just waiting til the first of the year and then call and see what they think unless they call me first. They assured me that Makily's heart surgery is not urgent and just that she will need it done before she is 3 so I am not wanting to rush it. I'll keep you all updated.

Thursday, December 1, 2005 5:41 PM CST

Well yesterday was Makily's cardiology appt. Deborah and I had a heck of a time getting there. We got lost and then once we got parked had to walk about 5 blocks to finally get to where we needed to be. Walking swiftly for that distance wasnt easy on my poor pregnant sister but she hung in there! Makily didnt like the nurse that took us back. It took about 4 tries to finally get Makily's blood pressure and so she didnt appreciate it! They also did an EKG which is always a ton of fun. Try explaining to a 20 month old to be still for 5 seconds....ha ha! We finally got her to be still long enough to get the EKG. The last thing that was done was an echo. I was a little concerned because Makily had been so active the whole appointment. The cardiologist had mentioned she may need a sedated echo if Makily wasnt still enough. This made me nervous but I had no need to worry. They had me lay with Makily on the bed and we snuggled and watched KIDSONGS while the lady did the echo. Makily was so good and didnt get upset really at all. She just played with her feet, talked to the TV and every now and then would put her hand over the ultrasound lady's hand....as if she were helping to guide her to the right spots! It was TOO CUTE! Wish I had a picture of that! The bad news is that the holes in her heart are still there and are no smaller. Her heart is still moderately enlarged. The doctor said that it is something that does need intervention. THANKFULLY she was pretty certain that they can do the surgery alot like a heart cath procedure is done. Makily will not have to have her chest cut open or ANYTHING awful like that. They will just put a catheter up through the artery in her groin and place a "patch" over the holes that way. They may not be able to repair the smaller hole but she said that one isnt really going to cause any damage and that if they can't close it that it's not a problem. She is going to speak with the heart surgeon and review the echo and he will decide if he feels Makily is big enough to go ahead and do the surgery. She said that Makily is on the smaller side of kids he likes to do so he may want to wait for her to put on a few pounds. If he is happy with her size then it's really up to Allen and I when to do it. Part of me wants to get it over with and the other part wants to wait. I really don't know. They did reccommend it be done before she is 3 years old. She gave us clearance for her to have her ear tubes place 12-14 so that is a go for now. I will keep you all updated.

Monday, November 28, 2005 6:29 PM CST

Makily had her 18 month well check today (so she is 19 and a half months who's counting?) It was nap time so she was very sleepy by the time Dr. Pierre came in. I am happy to say that her ears are better. The right one just has some fluid but overall they are good....phew! She had her second flu shot and so hopefully we are covered for flu season now! I just finished feeding her vegetables with beef dinner and some banana yogurt juice. Still struggling with oral feedings but she has come so far from where we started. She is 17 lbs 8 oz. She had some diarrhea again from the antibiotic shots so I am assuming that is why her weight is at a stand still again. Dr. Pierre and I discussed Makily possibly refluxing again. I noticed a few times last week she had Alimentum in her mouth and I had NOT orally fed her. Since Makily had the Nissen last year she has not burped or vomited so this is a little concerning that she has at least spit up twice. We decided we would watch her and see how it goes. I am hoping it was just a fluke. We also talked about her neurology appt and Dr. Pierre is checking into when that will be. She wants Makily to go to Tampa for this, she likes the neuro group there and I don't think Nemours in Orlando has a peds neuro. Wednesday Makily has an appt with cardiology for surgical clearance. They will be doing an echo and will let us know how the holes in her heart look. I am praying they have closed OR have at least gotten smaller. We will see. My sister Deborah is going with me, she is a nursery and L&D nurse and was previously a cardiac nurse so she will be a great support and a wealth of knowledge. I am so lucky to have so many family members in the medical profession!

Thursday, November 24, 2005 10:41 PM CST

Today was a GREAT THANKSGIVING. I can't even begin to express all that I have to be thankful for. Makily had some sweet potatoes and mashed potatoes today! I tried some rice and turkey baby food but she wanted THE GOOD STUFF.....No she didnt eat the turkey leg but she was quite interested in it! HAHAHAHA! She enjoyed all the attention and company that she had today and was just the happy baby she is. I have been putting her in the walker with her splints on in prepartion for when he stander comes in. Suprisingly she has enjoyed it and hasnt screamed the entire time like she used to. It's funny to see her standing up, she looks so big to me and I will admit it does make my heart sink a little to see my fragile little baby turning into a strong toddler. She is such a blessing. Today was a good day.

Sunday, November 20, 2005 7:36 PM CST

Last night we went to Light Up Ocala. It was alot of fun. Micah (Makily's cousin) went and they had a ball playing together. They both enjoyed the music and all the excitement. Makily is feeling much better and she is acting like her sweet, funny self again. She is done with the antibiotic shots, now we are just doing the ear drops. I am hoping that totally kicks this infection out. She has MASSIVE diarrhea again. I wonder if there will ever be a week go by that I won't be wiping watery doo doo off of her!!! On a different note my grandmother was taken to the hospital this morning because they were afraid she may have had a stroke. She is doing well now, but they did admit her because her chest x-ray didnt look too hot Please keep her in your thoughts and prayers.

Thursday, November 17, 2005 10:03 PM CST

Ugh it's been a rough week for Makily. She has had this raging ear infection that didnt seem to get better. I got worried earlier in the week BUT the drainage started looking clearer so I thought the meds were working. Well she woke up this morning in a complete panic. Just screaming, kicking and crying. She only cries like this when she is in pain usually. I picked her up and she was hot. I tried to console her and it didnt work. She kept kicking and flailing her arms. Finally I calmed her down, started to change her diaper and take her temperature and it started all over again, just hysterical crying. Her temp was 101.3, this is after 7 days of an antibiotic. I just cried with her. I called Dr. Pierre's office and they told me to come right then. So I packed her and I up in the car (mind you neither of us had a shower/bath) I put a onesie on her and shorts on myself and went like that! Anyway Dr. Pierre said her left ear was so badly infected that the ear canal is almost swollen totally shut. My poor baby. There was so much crap in her ear we had to do an ear lavage and MY MY that was a ton of fun. Then Dr. Pierre put an ear wick in her ear to open the canal up some and then some drops. Makily freaked out the entire visit. Since the antibiotics she is on arent working and Makily was so bad she had to get a Rocephin shot. She will get this for 2 more days...I have to go back tomorrow at 9am for another one. She is very congested and snotty. When I left the office my shirt looked like I had blown my nose on it......only Makily had! She slept most of today and is sleeping right now as I type this. I can already see a difference and I know that the Rocephin shots are going to work. They just are painful and I hate for her to have to have it. I also hate it that they cannott do her tube surgery before Dec. 14th. I am praying that she doesnt get another infection between now and then and that the one she DOES have clears up very soon.

Tuesday, November 15, 2005 8:32 AM CST

Well Elizabeth, Makily and I went and saw Dr. Moser yesterday. The wait was a long one....an hour and a half. I have to say he was AWESOME though and as soon as he came in the room apologized for us having to wait. Not many doctors do that as many of you may know so this was nice. I told him I would rather wait 2 hours and see a good doctor than wait 10 minutes and have a bad one so we didnt mind. He looked in Makily's ears and said the right eardrum is perforated and infected but not draining anymore. The left one is NASTY bad infected and has all kinds of "guck" coming out. He confirmed that both tubes are out. He asked how Makily had done up until the tubes were out and I said WONDERFUL, she only had one infection the entire time they were in. He jokingly said "hmmmmm...what should I do then?" I said "Let's put tubes back in!" So we are are scheduled for the surgery on December 14th at APH. I am a little disappointed that we can't get it done sooner because poor Stinkeroo's ears are a mess. The only other options was to do it the day before Thanksgiving and that wasnt at APH it was at POPS. POPS is a pediatric outpatient clinic. I am not too keen on doing anything there. He said it's basically the same as doing it at APH as it's all the same anesthesiologists and staff BUT my reservation is if GOD FORBID Makily have any respiratory issues they would have to transfer her from POPS to APH, granted it's only 4 blocks but I just would rather not do that. Plus I want her to have a HAPPY TURKEY DAY so the only other option was to wait. Dr. Moser is making me get a cardiac clearance and I am sure this time we will have another echo as she hasnt had one since January. I am starting to get a little worried about the cardiac appt. I really want them to tell me the holes have closed....but I know in my heart they havent...Dr. Pierre told me a few visits ago she still hears the murmur....and Dr. Moser heard it yesterday when he was checking Makily. I have a call in to her Cardiologist so they should be calling me to set up an appointment ASAP so we can get clearance for her tubes. I know this kid has been through alot but typing the words "heart surgery" makes my stomach churn. They say it's a simple one (usually) but I just really was hoping to avoid it altogether. With the murmur still there I am starting to loose hope though. I will update again when I know more.

Thursday, November 10, 2005 8:27 PM CST

This is the third time I have tried to do this entry...It keeps disappearing into NEVER NEVER LAND!!
Stinkeroo has an ear infection....a double ear infection to be exact. She started showing her "I have an ear infection" signs yesterday so I made an appt. with Dr. Pierre for this morning. Both of her vent tubes are out and both ears are badly infected......sigh. She is back on antibiotics (pray she does not get diarrhea again). We have an appt. to see the ENT, Dr. Mosier on Monday. Dr. Pierre really thinks Makily needs the tubes to prevent CHRONIC infections like this and I agree with her. I am hoping that they will just schedule the surgery ASAP. It is a very quick and simple procedure and Makily will only need to be under for about 15 minutes. I am more worried about the anesthesia than the tubes going in her ears. Her little body just does not like anesthesia meds. I am hoping since she will only be under such a short amount of time that we will not have ANY respiratory issues. Despite the fact that both her ears are infected she is just a trooper. As long as she has tylenol or motrin she is happy. In fact tonight while we were watching Survivor she just hysterically laughed for a good 10 minutes. I have no idea what was so funny....I went and sat down next to her and tickled her a bit and then she really started rolling, I love to hear her laugh. It is so cute and the sweetest sound I have ever heard. I could listen to her giggle all day long. I will keep you posted on when she is getting the tubes back in.

Sunday, November 6, 2005 12:54 AM CST

We had an AMAZING vacation. Got home yesterday at about 2pm. It was a LOOONG drive up there and back but well worth it. Makily was the BEST. She had a wonderful time, did great during the 15 hour car ride and woke up rarely at night. She took everything in and it was so cool to see her light up at certain things. We went to a theatre called "Memories" in Pigeon Forge. It's an impersonator show. Makily was a trip....she kept looking at me as if to say "what is this all about". The flashing lights, loud music and excitement was very new to her but she handled it well. We also went to Christus Gardens in Gatlinburg and Makily talked through the whole tour. It's basically a museum that takes you through the life of Christ with wax figures of scenes from the bible. She oooo'd and ahhhh'd and was thrilled with everything she saw there, this was Makily's favorite activity during the trip. We also went to Cades Cove and saw lots of Wildlife, old churches, cemetaries and cabins dating back to the 1800's it was all so interesting. It was such an awesome week, the cabin we stayed in was BEAUTIFUL and I really didnt want to leave it! Elizabeth (my sister) and I relaxed in the hot tub almost every night we were there. We also stopped at a waterfall called "The Sink" and I found a comfy rock to sit on and just sat there watching the waterfall and listening to the beautiful sound. I could have stayed there all day. It was so peacefull. I found myself saying "How can people see a sight as amazing as this one and not believe there is a God?" We did so many things I couldnt even begin to tell you about all of it but it surely was a much needed vacation for the whole family!
I can't believe it's November! Where is the time going? Thanksgiving is coming soon and I need to start planning...where to begin!!!!

Sunday, November 6, 2005 12:54 AM CST

We had an AMAZING vacation. Got home yesterday at about 2pm. It was a LOOONG drive up there and back but well worth it. Makily was the BEST. She had a wonderful time, did great during the 15 hour car ride and woke up rarely at night. She took everything in and it was so cool to see her light up at certain things. We went to a theatre called "Memories" in Pigeon Forge. It's an impersonator show. Makily was a trip....she kept looking at me as if to say "what is this all about". The flashing lights, loud music and excitement was very new to her but she handled it well. We also went to Christus Gardens in Gatlinburg and Makily talked through the whole tour. It's basically a museum that takes you through the life of Christ with wax figures of scenes from the bible. She oooo'd and ahhhh'd and was thrilled with everything she saw there, this was Makily's favorite activity during the trip. We also went to Cades Cove and saw lots of Wildlife, old churches, cemetaries and cabins dating back to the 1800's it was all so interesting. It was such an awesome week, the cabin we stayed in was BEAUTIFUL and I really didnt want to leave it! Elizabeth (my sister) and I relaxed in the hot tub almost every night we were there. We also stopped at a waterfall called "The Sink" and I found a comfy rock to sit on and just sat there watching the waterfall and listening to the beautiful sound. I could have stayed there all day. It was so peacefull. I found myself saying "How can people see a sight as amazing as this one and not believe there is a God?" We did so many things I couldnt even begin to tell you about all of it but it surely was a much needed vacation for the whole family!
I can't believe it's November! Where is the time going? Thanksgiving is coming soon and I need to start planning...where to begin!!!!

Sunday, November 6, 2005 12:54 AM CST

We had an AMAZING vacation. Got home yesterday at about 2pm. It was a LOOONG drive up there and back but well worth it. Makily was the BEST. She had a wonderful time, did great during the 15 hour car ride and woke up rarely at night. She took everything in and it was so cool to see her light up at certain things. We went to a theatre called "Memories" in Pigeon Forge. It's an impersonator show. Makily was a trip....she kept looking at me as if to say "what is this all about". The flashing lights, loud music and excitement was very new to her but she handled it well. We also went to Christus Gardens in Gatlinburg and Makily talked through the whole tour. It's basically a museum that takes you through the life of Christ with wax figures of scenes from the bible. She oooo'd and ahhhh'd and was thrilled with everything she saw there, this was Makily's favorite activity during the trip. We also went to Cades Cove and saw lots of Wildlife, old churches, cemetaries and cabins dating back to the 1800's it was all so interesting. It was such an awesome week, the cabin we stayed in was BEAUTIFUL and I really didnt want to leave it! Elizabeth (my sister) and I relaxed in the hot tub almost every night we were there. We also stopped at a waterfall called "The Sink" and I found a comfy rock to sit on and just sat there watching the waterfall and listening to the beautiful sound. I could have stayed there all day. It was so peacefull. I found myself saying "How can people see a sight as amazing as this one and not believe there is a God?" We did so many things I couldnt even begin to tell you about all of it but it surely was a much needed vacation for the whole family!
I can't believe it's November! Where is the time going? Thanksgiving is coming soon and I need to start planning...where to begin!!!!

Thursday, October 27, 2005 6:46 PM CDT

Lots of things to talk about today!! Makily went to see Dr. Pierre on Tuesday...she has gained weight PRAISE THE LORD. She is now up to 17 lbs 13 oz (with clothes and diapy!). I have been putting her in size 6-9 month clothes and I am happy to say they fit her! FINALLY! Her ear infection is almost cleared up. Dr. Pierre gave me the okay to stop the antibiotic....she had the worst diarrhea I have EVER, EVER seen in my life. EXPLOSIVE AND WATERY...IT WAS SO GROSS! As awful as that was Makily has actually been in a great mood! She is very happy and playfull! We leave for vacation Saturday at 3 AM. I had mentioned previously that we are staying in a cabin in TN....I cannott wait to go! We are driving at night with the hopes that little Makily will sleep through the trip. Thankfully Auntie Liz has a portable DVD player and so if Makily IS awake we are bringing Nemo and plenty of her other favs with us. This kid, as much as I hate to admit it LOVES TV. She has radar for it I think! LOLOL I had to reschedule her appointment for her stander. She had gotten sick so we had to cancel. That is set up for the week after we return from vacation. I will keep you posted on that....if you remember its' not something I am looking forward to. Standers to me just look kinda barbaric. If it helps Makily stand and walk then I guess I can deal with it.
She has started doing something new that is concerning me a bit. Before her cleft surgery I noticed her doing it actually. She does this weird shaky thing. It's very short maybe 5 seconds or less. It started out just her hands would do it but graduated to her hands and feet. I notice it when she is excited and playing. I have never seen her do it in her sleep or if she is just resting. I *think* it has something to do with her being excited and not knowing how to express herself...or since she is gaining weight and having a growth spurt possibly certain parts of her nervous system may be *waking up*. After the cleft surgery she stopped doing it and I was relieved. Well she did it last night while playing with her Daddy...she was excited and happy. I do not believe this is a seizure (believe me if I did, Dr. Pierre would be hearing all about it right now) but I know that seizures come in all shapes and sizes if you will. So I am going to mention it to Dr. Pierre and see how much longer it will be til we see neurology for an evaluation.
On Monday I got to witness my God Daughter being born. It was amazing to say the least. This was the first live birth I have ever physically attended and while I have to admit I did think "gee, I am so glad that's not me right now" several times, it was AMAZING. Watching a new life take it's first breaths is very humbling. Her name is Aubrey Reese Teal, she weighed 7 lbs 8 oz. Trish (her mamma)had no pain meds or epidural and I have to say she is stronger than me because I don't know if I could have done it myself! It did really make me think about having more children. YES I AM CRAZY! As some of you may or may not know I have a balanced translocation that caused Makily's unbalanced translocation that resulted in her Trisomy....**how many of you are scratching your heads?** hahaha....Basically what that means is that we are at risk for having another sick baby. As much as I adore Makily I do not think it would be fair to put another child through all the pain and surgeries she has been through. We basically have about a 30hance of it happening again. So while Allen and I know we want more children, we just dont' know how we are going to go about having more. There are many options out there and so we are weighing them all. We havent made any hard core decisions as of yet. We want to make sure that Makily is healthy and happy before we do anything. She may have heart surgery early next year so before ANY decisions are made, we want that behind us. I am happy at this point that she was my first child....I don't know how I could have done that first year with another little one running around. Makily required so much care 24/7, she still does but I have to say IT IS SO MUCH EASIER than it was that first year. I look back and it's such a blur. She was so sick and I am still amazed at all she has overcome and how many times she was knocking on deaths door. God is so good. He delivered her from it every time.
I am planning on writing about Makily's first year and catch it up to the first caringbridge journal entry. I wish to God I would have started this page earlier but my mind just wasnt "with it" back then. I will let you know when I have written it and will link to it very soon.
Thanks for following along in our journey.

Thursday, October 27, 2005 6:46 PM CDT

Lots of things to talk about today!! Makily went to see Dr. Pierre on Tuesday...she has gained weight PRAISE THE LORD. She is now up to 17 lbs 13 oz (with clothes and diapy!). I have been putting her in size 6-9 month clothes and I am happy to say they fit her! FINALLY! Her ear infection is almost cleared up. Dr. Pierre gave me the okay to stop the antibiotic....she had the worst diarrhea I have EVER, EVER seen in my life. EXPLOSIVE AND WATERY...IT WAS SO GROSS! As awful as that was Makily has actually been in a great mood! She is very happy and playfull! We leave for vacation Saturday at 3 AM. I had mentioned previously that we are staying in a cabin in TN....I cannott wait to go! We are driving at night with the hopes that little Makily will sleep through the trip. Thankfully Auntie Liz has a portable DVD player and so if Makily IS awake we are bringing Nemo and plenty of her other favs with us. This kid, as much as I hate to admit it LOVES TV. She has radar for it I think! LOLOL I had to reschedule her appointment for her stander. She had gotten sick so we had to cancel. That is set up for the week after we return from vacation. I will keep you posted on that....if you remember its' not something I am looking forward to. Standers to me just look kinda barbaric. If it helps Makily stand and walk then I guess I can deal with it.
She has started doing something new that is concerning me a bit. Before her cleft surgery I noticed her doing it actually. She does this weird shaky thing. It's very short maybe 5 seconds or less. It started out just her hands would do it but graduated to her hands and feet. I notice it when she is excited and playing. I have never seen her do it in her sleep or if she is just resting. I *think* it has something to do with her being excited and not knowing how to express herself...or since she is gaining weight and having a growth spurt possibly certain parts of her nervous system may be *waking up*. After the cleft surgery she stopped doing it and I was relieved. Well she did it last night while playing with her Daddy...she was excited and happy. I do not believe this is a seizure (believe me if I did, Dr. Pierre would be hearing all about it right now) but I know that seizures come in all shapes and sizes if you will. So I am going to mention it to Dr. Pierre and see how much longer it will be til we see neurology for an evaluation.
On Monday I got to witness my God Daughter being born. It was amazing to say the least. This was the first live birth I have ever physically attended and while I have to admit I did think "gee, I am so glad that's not me right now" several times, it was AMAZING. Watching a new life take it's first breaths is very humbling. Her name is Aubrey Reese Teal, she weighed 7 lbs 8 oz. Trish (her mamma)had no pain meds or epidural and I have to say she is stronger than me because I don't know if I could have done it myself! It did really make me think about having more children. YES I AM CRAZY! As some of you may or may not know I have a balanced translocation that caused Makily's unbalanced translocation that resulted in her Trisomy....**how many of you are scratching your heads?** hahaha....Basically what that means is that we are at risk for having another sick baby. As much as I adore Makily I do not think it would be fair to put another child through all the pain and surgeries she has been through. We basically have about a 30hance of it happening again. So while Allen and I know we want more children, we just dont' know how we are going to go about having more. There are many options out there and so we are weighing them all. We havent made any hard core decisions as of yet. We want to make sure that Makily is healthy and happy before we do anything. She may have heart surgery early next year so before ANY decisions are made, we want that behind us. I am happy at this point that she was my first child....I don't know how I could have done that first year with another little one running around. Makily required so much care 24/7, she still does but I have to say IT IS SO MUCH EASIER than it was that first year. I look back and it's such a blur. She was so sick and I am still amazed at all she has overcome and how many times she was knocking on deaths door. God is so good. He delivered her from it every time.
I am planning on writing about Makily's first year and catch it up to the first caringbridge journal entry. I wish to God I would have started this page earlier but my mind just wasnt "with it" back then. I will let you know when I have written it and will link to it very soon.
Thanks for following along in our journey.

Thursday, October 20, 2005 2:30 PM CDT

Well Makily's ear infection is not stopping her from doing new and better things! She sat up UNASSISTED for a good 5 minutes today at therapy! THIS IS HUGE FOR HER! It's the longest she has ever done this and I am just estatic. Just when I start to feel like she isnt making any progress and get discouraged she does something big and proves me wrong! I JUST LOVE THIS KID!
We went to speech therapy and Elon was VERY happy with her. (by the way say a prayer for Elon, she's been really sick) She is pleased with the improvements Makily has made with eating baby foods but we really have to start pushing the bottle more. Makily hates it so much, but it's very important. I did it with Makily when we got home and she of course hated it but is swallowing more...she still fights me but I tell her I am bigger and more determined! ;-) hee hee.

Monday, October 17, 2005 4:08 PM CDT

Well this kid sure knows how to keep me on my toes. After we had such a great day yesterday, she woke me up this morning around 9 crying. I picked her up and she was soo hot. I checked her temp and she was 102.8...this is the highest her temp has EVER been. So I dosed her up with Tylenol. I already had an appt to see Dr. Pierre today for Makily's 18 month well check so we went in at 1:15. Her right ear is INFECTED....BAD! If you recall this is the same ear that we noticed the tube had come out of last week. So here we are again...on antibiotics. -sigh- I don't mind it that much but they just give her such awful diarrhea and her butt gets TORN up from it. It doesnt matter how much butt cream I cake on her or how fast I change her...she has the most sensitive skin. I am going to call the ENT tomorrow and make an appointment to see him. Hopefully putting a tube back in that ear won't be that big of a deal. We will see.

Sunday, October 16, 2005 3:48 PM CDT

Today has been a lazy day...well for me at least it has. Makily has done pretty well, she woke up and I fed her (by mouth). Today it was beef and carrotts with pears. She did so so with the beef and carrotts but really well with the pears. I am not sure she has mastered swallowing it yet. I often wonder how much has gone down and how much is on her and I. After that we worked on sitting up....if you can remember she was really getting the hang of it before her cleft repair. Then she just wouldnt do it. Well the past 2 days I think she has really decided she wants to. I have worked with her twice so far today and each time she is sitting independently longer and longer. I am so proud of her. I just wish to God I could get the kid to use her hands and arms more. It drives me crazy. Sometimes I will put things in her hand and she will jerk away almost as if it's burnt her. This happens alot so I am thinking it is a sensory issue. Not sure what to do about it as we are always rubbing and playing with her hands. She laughed yesterday when everyone was clapping for her but she won't clap herself...just kinda looks at you. I am always doing simple signs at her too, I don't know how much she is understanding...but I will continue doing it because I am sure one day she is just gonna do it back. I use more, eat, baby, please, mamma, daddy, all finished, sleep and bye bye. I think I have seen more, eat and bye bye once or twice but she hasnt done it again so I am not sure. I hope I will eventually be fluent in sign....not only for Makily's sake but I really think it's so pretty. She is getting alot more vocal and coos and babbles SO MUCH especially in the evening...from around 6-11 or 12 she is constantly making "Sweet Makily Sounds". I am usually in her face during that time saying "MAMMA" and doing the sign because I am determined this will be her first word, whether she says it or signs it, I don't care...I will take what I can get! She really will stare at your lips as if she is trying desparately to figure out how to do it. She will one day....I just know it.

Thursday, October 13, 2005 8:18 PM CDT

Well as you can see I finished Makily's Halloween costume. I think she looks so adorable in it. This year we will be spending Halloween in TN on vacation. Our family has rented a cabin in the mountains and I am looking forward to having some nice relaxing time. I think I may enter Makily in a costume contest at a fall festival we plan on going too while we are up there. It should be fun.
We are still struggling with eating but it is getting a little better, the screaming is not anything like it was at first. I think she has realized that I am not giving up and no matter how much she cries and screams that Mommy means business! I am a huge pushover when it comes to her and she knows how to get her way....this is just a very important thing for Makily. Not only will eating by mouth help us to one day be rid of the G tube but it will help in talking, stomach motility and so much more. Keep praying for us.

Tuesday, October 11, 2005 10:39 PM CDT

Makily went back to see Dr. Pierre today. Her upper respiratory infection is gone! HOOORAY! She does have MASSIVE diarrhea from the steriods and antibiotic though...sigh..anyways I think I will invest in stock with Desitin, Balmex and Budreaux Butt Paste. She is 16 lbs 3 oz so she is still a peanut and is not back up to the 17 lbs she was before her cleft repair. Dr. Pierre said not to be too concerned as the diarrhea will have something to do with her not gaining weight. Thankfully we are done with all the meds so it will clear up soon! She got a flu shot today and was AWESOME about it. She only cried until I picked her up and then she clung to me like glue!
Feeding issues are about the same....maybe a little better here and there but it's still so hard and frustrating and she just hates it. I am really being persistent though and I know it will pay off in the end. Yesterday she ate some Chicken Noodle Dinner (baby food) and did well with it....EVERYTHING has to have salt on it or she wants NOTHING to do with it. She does not care for sweet stuff at all, I try to sneak it in when I can but she knows!

Tuesday, October 4, 2005 2:53 PM CDT

We went to see Dr. Pierre today. Makily has an upper respiratory infection, one of her pits next to her ear is infected and the tube in her right ear is coming out...well it's already out but its sitting deep in her ear canal...sigh. So once again we are on antibiotics and breathing treatments every 4 hours....it could be worse. I am praying that since her palate is repaired that we won't have any problems with infections seeing as that tube is out.
We have really been pushing oral feeds. I have discovered Makily eats MUCH better when she is given something salty rather than sweet. I salted some green peas and she loved them! She is very hot and cold when it comes to eating by mouth. I try to do it at least 5 times a day with her....some days she will do it great all 5 times, other times it is a fight and she will scream the whole time and spit everything out. She is a moody girl! So far she is doing best with green peas and squash. She isnt doing as well with sweet potatoes like she used to. It's very frustrating though because sometimes I feel like I am banging my head against a wall with her. I get excited because she will eat happily one time and the next time I try she has a fit, so it's like a roller coaster with her. I should be used to that by now though right?
We went back to OT for the first time today and Mr. Jimmy was VERY IMPRESSED. He said Makily hasnt lost ANY of her skills in her time off from therapy....he says that she actually has gained and is doing GREAT! Even sick the kid was good for him today. She is so tough!
Tomorrow we have an appointment at 9:30 to have Makily fitted for a stander. This is something I have put off for as long as I could but after hearing from OT and PT how much it will help her I relented. It's not that a stander is a bad thing, it's just another harsh reality for me and while I know Makily has problems and is behind, her being fitted for things like this just reinforces that even more. I try not to focus too much on Makily's disabilities because it does upset me....so when I am forced too it's hard.

Friday, September 30, 2005 11:09 AM CDT

Things have been rough this week as far as eating is concerned. Wednesday was the first day we tried orally feeding Makily since her cleft repair. It didnt go well. She didnt want anything to do with it. While I knew ahead of time it would be a long road with lots of therapy to get her totally eating by mouth, there was a small part of me hoping that this would be easy. Today she did better for me. She took 2 bites of rice cereal with bananas and drank 2 swallows of apple carrot juice. I also did some excersizes to help her keep her tongue out of the roof of her mouth now that she has one! I basically put my finger in her mouth and pretend to be playing with her while holding her tongue down with my finger. She tolerated it rather well. I think right now that she isnt sure about swallowing and is afraid. Please pray the Lord will give Makily the strength and understanding and me the patience and knowlege to help her to eat. Sometimes it is just so frustrating, I wish I knew what I could do differently to make it easier for her and help her to do it.

Thursday, September 22, 2005 4:01 PM CDT

Today has been a pretty good day. Makily went back to speech therapy for the first time since her cleft repair. Elon and I were brave and tried giving her formula from the bottle. AMAZINGLY Makily didnt freak out like I had imagined she would. She isnt really sure of what exactly to do with it but she seems interested. She took a small amount and we found a pacifier she is able to get suction on. I am sure this is all so very strange to her as she was never able to really suck before the surgery. Dr. Steig saw her yesterday for her post-op appointment and he said her mouth looks WONDERFUL. He was very pleased at how she is healing and how clean her stitches and mouth are. He said usually he would see her back in 6 weeks but since he knows I am on top of things that he will see her in 3 months. Made me feel good, nothing like Mommy getting a pat on the back! When we go back in Dec he is going to send her to a dentist and orthodontist so they can check out her mouth and do x-rays to make sure all the teeth that are supposed to be there are there. She has 2 in the front bottem that are slowly coming in but nothing on top. So for now it looks like we are doctor free until December (with the exception of Dr. Pierre of course!). Makily is starting PT and OT back next week so I am anxious to see how well she does.

Tuesday, September 20, 2005 3:16 PM CDT

Things are going great! We went to see Dr. Pierre yesterday and Makily has only a little over 1 lb. She is down to 15 lbs 14 oz. I thought for sure she lost a total of 2 lbs., so I am happy I was wrong. She is back to her old self...smiling and loving Spongebob. She is still having lots of slobber so we started her on a med called Robinal and that is supposed to help. She sees Dr. Steig for a follow up tomorrow and I am sure he will say all is fine. I plan on taking her to speech on Thursday to see Mrs. Elon and then next week we will be back to all of her therapies! She sounds the same which I am happy about....just a bit louder which is actually good. She has such a quiet little voice. She hates her arm splints and I am counting the days until they come off! She has figured out how to get them off...she slings her arms until it flies off. She rubs her face and hair when they are off and likes to scratch her arms. I keep a close eye on her and make sure she doesnt poke fingers in her mouth when they are off. That is all for now. I will update more later this week!

Friday, September 16, 2005 2:57 PM CDT

Well we are home....OUR HOME! Makily and I came home last night. She is doing well but is fussy here and there. She hasnt needed any pain meds except regular Tylenol and that just seems to be at bedtime. She was up and down last night and I AM REALLY TIRED! Allen will be home in a few hours and we are going to spend some much needed family time together. Makily just lights up when he is home. It was funny because she had not REALLY smiled since her surgery and when her Daddy came home on Tuesday she finally smiled for him. I love that they have such a sweet relationship. I finally got a peak at Makily's palate and I am happy to say it looks like yours or mine! Just has some stitches! She still is having lots of secretions and we are getting a med called Robinal for that to see if it helps. I am hoping once her mouth is healed all the mucous and saliva will slow down. I plan on taking her back to at least speech therapy next week and then maybel all of her therapies the week after. She has a follow up appt w/. Dr. Pierre on Monday and a post op w/Dr. Steig on Wednesday. BUSY BUSY. Take a look at the pics, they are new. THANKS AGAIN TO MY FAMILY for all the love and support, they have been there right by our sides and I can't begin to express how much that has helped us cope with this. I also want to thank all of our friends that have prayed for us. I beleive that is why Makily is doing so AMAZINGLY well.

Tuesday, September 13, 2005 9:09 AM CDT

Well I am happy to say that we are home....well sort of home. Makily and I are staying with my Mom and Dad this week. We got home last night at about 6. Allen had to leave out yesterday to go to work and so for extra help and support we are staying with my parents. Makily is doing so much better. It seemed like once we got her through Saturday and early Sunday morning she really pulled through. She does still have some desaturations when she is sleeping and so I have her on her apnea monitor really all day.....I just unhook her when she is awake. She is really sleeping erratically which I expect is from the Tylenol with Codeine. She has tried to smile several times but her face hurts but you can see her smile in her eyes. She has TONS of mucous and saliva so they sent us home with a suction machine which Makily HATES! She desats when the secretions get really bad so I am staying on top of it. Makily has 14 poke holes in her!!! They stuck her 14 times to get an IV! I counted last night when I bathed her. Her left hand is where they finally went and it looks terrible. It had been balled up for 3 days because of the way it was wrapped. Well when they took out the IV yesterday Makily was HILARIOUS! She kept lifting that hand in front of her face and opening and closing it! She had a look of sheer amazement at her "new" hand. She is so silly. She has definitly lost weight, I didnt realize how much until I bathed her last night. I am assuming about 2 lbs. That may not seem like much but when you are only 17 lbs it's ALOT! She is also pretty weak and floppy, I am sure in time though she will gain her strength back with Mr. Jimmy and Janet! We are working on getting her back to full feeds and I can't wait to be able to feed her by mouth! No corn on the cob Dr. Pierre....I promise! Elon and I will stick with formula and sweet taters for now! I will post pictures when I can. I have not seen her cleft yet as Makily does not like you sticking anything in her mouth. When she sleeps I have tried to peak but I can't see much. She is still a bit swollen but is SO much better. I am amazed at how strong she is.

Tuesday, September 13, 2005 9:09 AM CDT

Well I am happy to say that we are home....well sort of home. Makily and I are staying with my Mom and Dad this week. We got home last night at about 6. Allen had to leave out yesterday to go to work and so for extra help and support we are staying with my parents. Makily is doing so much better. It seemed like once we got her through Saturday and early Sunday morning she really pulled through. She does still have some desaturations when she is sleeping and so I have her on her apnea monitor really all day.....I just unhook her when she is awake. She is really sleeping erratically which I expect is from the Tylenol with Codeine. She has tried to smile several times but her face hurts but you can see her smile in her eyes. She has TONS of mucous and saliva so they sent us home with a suction machine which Makily HATES! She desats when the secretions get really bad so I am staying on top of it. Makily has 14 poke holes in her!!! They stuck her 14 times to get an IV! I counted last night when I bathed her. Her left hand is where they finally went and it looks terrible. It had been balled up for 3 days because of the way it was wrapped. Well when they took out the IV yesterday Makily was HILARIOUS! She kept lifting that hand in front of her face and opening and closing it! She had a look of sheer amazement at her "new" hand. She is so silly. She has definitly lost weight, I didnt realize how much until I bathed her last night. I am assuming about 2 lbs. That may not seem like much but when you are only 17 lbs it's ALOT! She is also pretty weak and floppy, I am sure in time though she will gain her strength back with Mr. Jimmy and Janet! We are working on getting her back to full feeds and I can't wait to be able to feed her by mouth! No corn on the cob Dr. Pierre....I promise! Elon and I will stick with formula and sweet taters for now! I will post pictures when I can. I have not seen her cleft yet as Makily does not like you sticking anything in her mouth. When she sleeps I have tried to peak but I can't see much. She is still a bit swollen but is SO much better. I am amazed at how strong she is.

Sunday, September 11, 2005 12:16 AM CDT

Hello All....Makily had a terrible day yesterday and an even worse night. She grunted, kicked and flailed her arms ALL DAY and I mean ALLL DAY! She didnt sleep at all and was wearing herself out. She wouldnt even calm with the pain meds. We tried everything to no avail. Finally last night I asked one of the nurses what we could do because Makily was requiring more and more oxygen to the point it was blowing in her face constantly. We figured if we could calm her that her breathing would settle. They were afraid to give her anything really strong due to her already comprimised airway, the last thing we need is for her to stop breathing due to exhaustion and drugs. So they gave her a very low dose of benadryl and PRAISE GOD it worked...she finally calmed for a little while and slept. The SCU doctor came in and listened to her chest and also ordered some steriods to help open up her airways. Our nurse last night was WONDERFUL...after she was given the steriods he stayed in the room and watched her for a long time. Her sats kept dropping to 84-86 He told me that they were discussing re-intubating Makily. This scared me to death. Not long after that the PICU doctor came in to look at Makily. He listened to her and said that since she was calm at that point we just needed to watch her very closely and that he would be back to check on her later in the night. Makily woke up about an hour later and started grunting and flailing again. I was very concerned so the nurse and I did EVERYTHING we could possibly do to get her comfortable and avoid her being back on a ventilator. Praise the Lord we got her through the night and she is much better today! Her breathing is still labored but she is not requiring oxygen at all...she does desat when she is sleeping but as soon as it goes down she brings it back up on her own without the oxygen. As long as she continues to improve today and not require the oxygen and tolerates her feedings we can go home tomorrow. They are arranging us to go home with a suction machine as we cannott use the bulb on her because of the risk of hurting the cleft repair. Thank you for all the prayers I am confident that is what kept Makily off the ventilator and out of ICU.

Saturday, September 10, 2005 12:58 AM CDT

Hey guys just a quick update....Makily is doing okay. She is NOT a happy camper though! She has splints on both arms and her little hand is totally bound up because they have the IV in it...they stuck her so many times that they are taking extra precautions not to loose the IV they finally were able to get. Her little face is very swollen and her tongue is too, her mouth looks pretty icky right now. She is requiring blow by oxygen every now and then and she is having alot of secretions (blood, mucous, saliva) so they are having to suction her alot...which makes Makily VERY ANGRY! They havent said anything about going home today so I am not sure when we will...since she still needs the blow by every now and then I am thinking we may stay another day or two. Overall I have to say she has really come through all of this like the FIGHTER that she has always been. She has gotten to the point when any of the medical staff comes in she starts to fight them immediately. She has learned very quickly....
They are really good about pain control and have been giving her Tylenol w/codeine every 4 hours.
I will update again when I can. Thanks for all the prayers...love you guys.

Friday, September 9, 2005 12:53 AM CDT

Hello Everyone!!!!!

This is Auntie Deborah updating for Makily and Trish. Makily is doing well. The surgery got off to a slow start because they had a hard time getting an IV in Makily, and they also had some difficulty intubating Makily (big surprise). They finally got things in order and the surgery started about 8:40 AM. They said it would take at least 2 hours, and at 9:50, I got a call saying she was out of surgery already!!!!! The Surgeon said he was worried that there would not be enough muscle and tissue to work with because of Makily's genetic condition, but he was WRONG!!! There was plenty to work with. He believes that the cleft palate was a result of Makily's Pierre-Robin Sequence, and that her tongue stayed up at the roof of the mouth in utero, and that is why it never closed. Praise God it is all over!! Makily is going to stay in the Special Care unit overnight. There is some swelling, and she is requiring oxygen occasionally because her oxygen levels drop, so she is getting Blow-By oxygen. The surgeon says if Makily continues to do well, and the oxygen problem resolves soon, he will let her go home tomorrow. Well, we don't want to rush things, and the sureon says he will be very cautious. Makily was very happy when they let Trish rock her for a while, and she settled down and went to sleep. Trish says she feels like a huge weight has been lifted from her shoulders, and wants me to thank everyone for praying for her, Alan, and Makily!! I will update again later with Makily's room number when Trish calls me with it, so keep checking back!!!!!

Proud Auntie Deborah :)

Thursday, September 8, 2005 8:21 AM CDT

Good Morning Everyone! We will be leaving for Orlando this afternoon. I havent really slept all night....and for some strange reason I am not tired either! Makily is still sleeping and I have some laundry going and a little more packing to do. The surgeon told me that Makily will only need to be in the hospital over night....I have heard this in the past and ended up spending 2 weeks in the hospital with her so I am preparing to stay longer. It would be AMAZING and truly a miracle if WE ARE there over night....Makily has surprised me before so I am praying she will do it again! Like I said before though I don't want to leave too early and run into problems either. This will probably be the last time I update the site until after her surgery. They have computers at the hospital and if I can I will update there, if not I will have someone do it for me. I just want to thank EVERYONE who has called and emailed me expressing their love and prayers for Makily and our family. It's overwhelming sometimes how many people love her and are thinking of her during this time. Please continue to pray that Makily's airway holds up after surgery. This is my biggest fear right now that she will have breathing difficulties. I am leaving it all in God's hands though. He has pulled Makily through worse.

Wednesday, September 7, 2005 6:42 PM CDT

Today was a busy day! Makily and I got up at 6:00AM and drove to Orlando for her hospital registration. That went pretty well. We had a little bit of a wait because they were short staffed but other than that it was a pretty uneventful appointment. They just took her medical history and a copy of the bloodwork that Dr. Pierre did on Tuesday (Thanks Dr. Pierre for doing that, Makily appreciates only being stuck once!). We came back Ocala, dropped some Katrina supplies off at the church, went to the post office and then home...YAWN! Makily and I plan to leave tomorrow around noonish to go to Orlando. Allen will follow after he gets off work at about 3 and then Mom and Dad are coming up after 5. It seems like every morning this week when I wake up I have been more anxious than the day before. I am really nervous about this whole surgery. I can't wait for it to be over with. I know that Makily has so many praying for her and that there are a few angels in Heaven looking over her. God will protect her.

Saturday, September 3, 2005 11:10 AM CDT

Things went well at the pre-op with Dr. Steig. It was weird because half the appointment is done by the nurse. She basically explained that Makily will have to have splints on her arms for 3 weeks to keep them straight after the surgery. This is to prevent her from putting her fingers into her mouth. If you know Makily at all, you know that her favorite past time is putting her fingers in her mouth...I am not looking forward to living with the splints for 3 weeks but I have dealt with worse. The nurse said they had a child come in yesterday actually and his parents had taken his splints off but were watching him and well, it happened very fast...he put his fingers in his mouth and popped his palate back open. I do not want to go through that so we will just have to suffer with them.
For 3 weeks the only things we are "allowed" to put in her mouth is a bottle or a pacifier. So the oral feeds she is used to she can't have...NO SPOONS. I can't believe I am actually going to say this but I am thankful for her G tube now...her getting dehydrated is going to be a non-issue THANK GOD!
Dr. Steig explained that he wanted Makily on an antibiotic after the surgery...he says it's not mandatory BUT he feels important to prevent ANY kind of infection that may occur. He prescribed amoxillian which I am not happy about because Makily has had it before and had EXPLOSIVE diarrhea. I told him that and he was pretty adamant that he wanted her on that one as it covers so many bacterias. I told him that I will just deal with the diarrhea! He also kind of wavered on pain medicine when we go home and I told him that Makily does well with tylenol with codeine (this is liquid gold in our house!) He said alot of times the kids don't even need anything but regular tylenol but since she was going to have diarrhea from the antibiotic he would give us the tylenol w/codeine since it will help with that (codeine is known to constipate). So we already have those scripts and will fill them this week so we won't have to worry about it after surgery.
I explained my fears about Makily's airway swelling after surgery and having breathing issues. He said if he was concerned he would just wait longer to do the repair but he feels she big enough and strong enough to handle it. I am trusting that he is right (although it is hard for me to trust ANY doctor other than Dr.Pierre..THANKS TO SHANDS!). After the surgery Makily is going to be VERY swollen, I have befriended another mom who's son has the same type of cleft (PRS but his is only of the soft palate though, not the hard and soft like Makily's) She said after his repair she didnt recognize him he was so swollen, she said she knew him by his toes (he has a crooked one). I am afraid of seeing her after surgery, I know it will be very emotional for me. This is something I have waited for since the day she was born, BUT on the other hand seeing her that way is going to break my heart. I just wish I could take all the pain away and do it for her....she's too little to go through this stuff. She is a tough cookie and been through worse. The nurse also told me that Makily will not sound the same once her palate is closed. I didnt know that and it hit me like a ton of bricks. I have come to love her little voice and cry....it will be hard for me to let that go and get used to my baby not sounding like my baby. I am getting teary-eyed typing that. I know it's all for the best and that God Willing this repair will help Makily to communicate better with us and to be able to eat like a champ but it's so hard and I am slowly dreading next week more and more.
We have to be at the hospital at 5:30AM!!!!!! The surgery is at 8:00am. My Mom, Dad, Allen, Me, Makily, my sister Elizabeth and possibly Deborah are getting a big suite together and so we will spend Thursday in Orlando...that way we will won't have to get up at 2:00am to get there on time! I plan on going up early with Makily so we can spend some relaxing time together and maybe sit by the pool in the sun. I will be taking LOTS of pictures. I know it sounds crazy but I want to REMEMBER all of this. I look back at her NICU pictures and am in awe of how far she has come and all the odds she has beaten. I plan on doing the same with her cleft pictures. I also hope that maybe Makily's story could help another parent through what Makily and our family is going through. I have scoured the internet and reading other's stories really helps me in so many ways.
Makily has a bloodwork appointment on Tuesday morning with Dr. Pierre. We are doing a H&H and checking her Thyroid. The H&H is in preparation for the surgery. Her thyroid is being checked because she had some strange results twice in the past so we are just rechecking it to be on the safe side.
On a bright note, Makily has ANOTHER TOOTH! And yesterday she tried to eat a TORTILLA CHIP!! At first she just licked it while grinning at me...then she held it IN HER HAND and licked it...well a few second later I hear a crunch..I grabbed the chip from her and SHE HAD BITTEN A PIECE OFF!!! I swept it out of her mouth and she looked at me like "Ma, ya beg me to eat...I do and then you take it away...what a freak you are". I know as Makily's therapist Elon is reading this she is probably screaming HOORAY MAKILY!
She is also starting to sit up INDEPENDENTLY for 10-20 seconds at a time. THIS IS HUGE FOR HER. I actually have a short video of it and if you would like to see it email me and I will send it to you. It's a cute video, I just can't figure out how to post it online.
That's all for now. Thanks for following along.

Thursday, September 1, 2005 8:05 AM CDT

Well tommorrow is Makily's pre-op with Dr. Steig...I am ready to get it over with. Allen's schedule ended up working out so he will be off starting today at about 3pm til Monday night at midnight!!! So he gets to go with Makily and I to the pre-op! I always enjoy it when Allen is able to go to Makily's appointments. Makily has been such a happy girl this past week, she has laughed and smiled so much at me and her Daddy. I don't know what has happened but it's like she has finally started to be more aware of things, I love it!
As you can see from the header Makily is going to have another cousin. My sister Deborah is pregnant again and we are all very excited about the baby. She just found out on Monday. Please keep her in your prayers that she will have a safe and healthy 9 months. She had gestational diabetes her first pregnancy so we are praying she doesnt have to go through that again.

Sunday, August 28, 2005 4:13 PM CDT

Well we didnt go to the beach this weekend. I was afraid had we gone that Hurricane Katrina would have rained us out! Oh well! Allen got to go to church with us this morning which was wonderful! Makily talked alot though the singing and as soon as the preacher started...she was handed off to her Nanny within minutes she was out like a light! No one not even ME her own mother can put Makily to sleep like her Nanny!
Friday is Makily's second (but who's counting) pre-op with Dr. Stieg (plastic surgeon). Allen will be working during the day time and both my sisters are also working so my WONDERFUL Dad is going to take off work and go with Makily and I. It ought to be a fun trip, my Dad is so crazy...I'm actually looking forward to it.

Thursday, August 25, 2005 12:57 AM CDT

Makily is FINALLY over her cold! I stopped all breathing treatments and Sudafed last night and she sounds great. I also have slacked off quite a bit on the rice cereal and the retching at night has stopped so I think she was just getting too full. I really am trying to pack the weight on her! We went to the duck pond last night...that was fun. Makily got to play in the swing for the first time...she seemed to like it! She is doing so much better in therapy and is really getting stronger. We are thinking about going to the beach over the weekend, I want to have at least one nice relaxing day at the beach before we have to start running around for Makily's pre-op's, blood work and hospital registrations.

Monday, August 22, 2005 10:11 PM CDT

Makily is FINALLY back to her spunky little self! We are done, done, done with her antibiotics and she is looking and sounding so much better. I am giving her one more dose of Sudafed tonight and a breathing treatment and then I am going to stop it and see how she does. We were really struggling with dumping and retching again but I believe it was mostly due to the antibiotics upsetting her tummy. She has the weakest little stomach. Tommorrow we have a play date with Auntie Deborah and Cousin Micah at Jervy Gant. This will be Makily's first time there! I am sure it will be alot of fun. We are going in the morning to make sure it's not too terribly hot. I will probably take some pictures and post them.

Thursday, August 18, 2005 9:39 PM CDT

What a busy day we had today! Makily had her re-check with Dr. Pierre. Her ears are pretty much better....finishing off the antibiotics on Sunday should clear up what is left. Her chest is still rattling a bit so we are going to continue doing breathing treatments through Sunday and I am praying that will kick the rest of this cold out of her.
We had speech therapy with Elon and then PT with Janet back to back. Makily did pretty good with that. Then Aunt Deborah, Aunt Elizabeth, Cousin Micah, Makily and me went to eat and then to the mall. After that we went to my parents house and were there for a while. Right now Makily is sitting in her bumbo seat watching MXE on TV. She is soo funny. I just love this kid.
I am off to bathe my sweet baby girl and go to bed.

Sunday, August 14, 2005 12:36 AM CDT

Hello again. I am getting good at updating the journal now several times a week huh?
As I had mentioned before we had not heard back from the plastic surgeon all last week....at all. The only time I did speak with them was when I called on Tuesday because we were having home phone issues and I was afraid I may have missed them.
They mailed us paperwork that we recieved yesterday saying that Makily has to have ANOTHER pre-op Sept 2....and that her surgery will be September 9, 2005. This is a day before our 5 year wedding anniversary. It's not a big deal though....we will spend it in the hospital with our daughter and be thankful that she finally has her mouth fixed and will hopefully be able to eat like a champ soon! At first I was angry because I was told August 29 was the first available day so I expected that to be our surgical date if not sooner....I had planned on calling asking why we werent doing it then. But after talking to my Dad, Allen and I decided it's best to just leave it alone and keep the date we were given.

Dr. Steig had explained that because of Makily's airway issues she is going to be closely monitored....the cleft repair will cause extensive swelling that may extend down her throat. I am hoping they are not too quick to discharge her because he said usually Day 3 after the surgery is when the swelling is at it's peak and that's when airway problems can arise. I am hoping they keep her til day 4 but if not we are thinking about just staying in Orlando through day 4 to be on the safe side...since Ronald McDonald House won't let us stay past Makily's discharge date we plan on just getting a hotel room. I would hate to be in Ocala and something happen here. Munroe is not a bad hospital but the one time we took her there they seemed scared of her and had no idea what to do. I even had to spell out some of Makily's past surgeries to the nurses there. Ocala Regional doesnt have a pediatric floor. She is just too complicated to be in a regular hospital. She needs to be in a CHILDRENS HOSPITAL. Again I hope they just keep her through day 4 and none of this is even an issue. I am just trying to be as prepared as we possibly can.
She is still pretty sick with this dang cold. We didnt go to church this morning because I was afraid she would either give it to someone else or that she would be fussy. We are doing breathing treatments every 4 hours. Her antibiotic is giving her diarrhea which it never has before so I am going to add some rice cereal to her formula with the hopes it will help to alleviate the diarrhea. She is rubbing her ears alot too so I am sure they are sore and I am trying to stay on top of giving her tylenol or motrin for it.
So that is the update for now. If anything changes I will update again. Thanks for following along.

Friday, August 12, 2005 10:33 AM CDT

Well, Well, Well......God really knows what he is doing...once again I am learning that his time is THE ONLY time to go by....Patience truly is a virtue.
I took Makily to see Dr. Pierre this morning. She has had this cold on and off for 3 weeks and I noticed her ear draining a few times....it was clear so I wasnt too concerned but like I said in my last entry I wanted Dr. Pierre to be the doctor THAT I AM NOT! LOLOL! Makily has a bilateral ear infection, her chest sounds "yucky", AND she is teething(FINALLY THANK GOD!). So she is on an antibiotic, ear drops, a decongestant, breathing treatments and tylenol for the ear pain and gum pain. THANKFULLY Dr. Pierre gave us samples of ALL of Makily's medicine...this saved us a ton of money and I APPRECIATE IT SO MUCH!!! Thanks Again Dr.Pierre....Makily told me to send you slobbery kisses!
It's a good thing her cleft surgery wasnt scheduled because chances are this would have just gotten worse or she would have ran into trouble after the surgery....last thing we need right? I still havent heard back from the plastic surgeon's office with a surgical date either. I was going to call today but I will wait until next week now since she is sick.
This kid truly amazes me...she has not been cranky or extra moody at all. I am sure her ears and gums have been hurting her and she just deals with it, she was even smiling at Dr. Pierre today and didnt fight her when she looked in her ears...and you know they had to be sore. She wasnt to keen on letting us look at her tooth that is EVER SO SLOWLY coming in. We didnt push it though. She is so strong, I just love her.
On a good note...she has gained 1 lb. in a month so she is up to a WHOPPING 16 lbs....WHAT A BRUTE! We have an appt next Thursday for a recheck to make sure her ears are better. Updates to come.

Thursday, August 11, 2005 10:24 PM CDT

Today was a good day for Makily and I. We went to speech therapy this morning and Makily did very well...Elon and I had to wake her up and after she reluctantly did she really did well. Then we had physical therapy with Janet. Again Makily did great with her too and didnt scream like she usually does. She is really doing alot better in therapy and I am so proud of her.
I still have not heard back from the plastic surgeon's office and I believe that God is really testing me and teaching me patience.....IT'S SO HARD! I am going to make a VERY polite call tomorrow and ask them if they have heard anything and if we have a date yet. You would think I could get some kind of answer since we were there on Monday and tomorrow is FRIDAY!
I am taking Makily to Dr. Pierre tomorrow morning at 8:30. She has had this cold for several weeks now and I just want Dr. Pierre to check out her and say it's okay. I noticed her right ear draining the other day and it's continued so I just want to make sure it is not infected. It was sensitive when I bathed her tonight too so I just want it checked out. She is also due for a weight check so I am praying she has gained. I will update again soon.

Tuesday, August 9, 2005 11:13 PM CDT

I am feeling better today guys. I do have to say though if I didnt have bad luck I would have none at all. I had stopped at a local bargain store before going to OT with Makily today. I was so excited because they had Huggies in her size for DEAD CHEAP....(i love a bargain) so I stock up on those and a ton of other stuff. I go to leave and IT'S POURING RAIN....I couldnt just wait for it to slack up either because I had to get Makily to therapy so...I put a blanket over her and get her in the car and then run back and forth in the rain to the buggy to get the rest of the stuff....by the time I was done I WAS SOAKED!!!
I talked to the Plastic surgeon's office today....his new surgical coordinator was VERY NICE (thank god...I needed that) and said that since Dr. Steig is a "visiting" doctor at APH that they only offer him every other Monday and Friday as surgical dates...well they are booked up already on those days "for a while" she says. I asked her how long and she said the first date would be Monday August 29th, SHE SAID she felt that was too long to wait because Makily just had her pre-op and so she is going to talk to Dr. Steig and see if he can pull some strings. I can't believe she was soo nice and was willing to go that extra step. I didnt even have to ask....so we will see...I guess as of right now we are looking at August 29....which is what I said would end up happening back in June when all this run around started. I hate to be right. -sigh-

Monday, August 8, 2005 8:55 PM CDT

Elizabeth (my sister,) Makily and I all went to Winter Park today to see the plastic surgeon for Makily's pre-op. The appointment didnt go that great. I had an "emotional" break down at one point. I am proud I have learned to just stare at the wall when I get like that and let whoever is with me speak for me. That may sound crazy and maybe it is but I havent denied being nuts lately either. I don't want to go into details but I will say that sometimes I feel like I can't win no matter what I do. Smiling and nodding to keep yourself from exploding can get very hard sometimes.

I still do not have a surgery date for Makily....I am starting to think she will be 21 before they repair her cleft...*okay I am being a drama queen*....they said another 2 weeks at least...if not more than that. The problem is that Arnold Palmer Childrens Hospital is very booked when it comes to OR time. They are totally booked up for at least the next 2 weeks if not more....sigh. They could do the surgery at ORMC (Orlando Regional) but all of Makily's specialist go to APH....he also mentioned doing it as outpatient surgery BUT I wouldnt feel comofortable with that and neither is her surgeon. Makily needs to be in a Childrens Hospital....just in case the unforseen happens...I don't want to take any chances in that department.
So after a hour and a half drive, a 2 hour wait, an emotional breakdown and A REALLY NASTY POOP from Makily....we still don't know anything...and she still has a cleft palate. I will update again when and if they ever decide to do it....I am gonna go take a Xanax and go to bed.
I promise I will be my cheery positive self again tomorrow....I am just tired and drained tonight.

Sunday, August 7, 2005 7:34 PM CDT

Makily has her pre-op appointment with the craniofacial doctor tomorrow at 2:15. My sister Elizabeth is going with Makily and I. It's always nice to have someone with us...especially if I don't get my way!!! ;-) We should be getting a date for her surgery and I am hoping it is within the next week. Allen's work is wonderful and they are very accomodating when he needs to take a short week or time off for Makily. We are very fortunate in that respect. I need to also find out tomorrow what to do in order to get things arranged for us and the rest of the family to stay at the Ronald McDonald house. They were very nice to us last time and it's so convenient for everyone to just be right across the street instead of trying to fight Orando traffic....that we are NOT used to! I most likely will just stay with Makily in her room but if she goes to the PICU I am told they don't let you stay with them as it is set up sort of like a NICU there. I am praying we skip the PICU and go directly to the PEDS floor after surgery but this has never happened with her in the past so I am preparing myself. It seems like the older she gets the more anxiety I get about her being operated on. I am so afraid for her.
I will update everyone tomorrow when we get home from Orlando. Please pray things go well and we can get this surgery done and over with very soon.

Wednesday, August 3, 2005 8:03 PM CDT

Today was a very sad day. This morning I was informed that sweet Caden Fair passed away last night in the loving arms of his parents. Caden was 3 months old and had an even rarer form of Trisomy 22 than Makily's. Like Makily this sweet baby has touched many hearts and lives and will be remembered forever...Sleep peacefully sweet Caden...I pray you are watching over our Makily.
Here is a link to his site:
http://www1.caringbridge.org/mn/cadenfair/

Wednesday, August 3, 2005 8:03 PM CDT

Today was a very sad day. This morning I was informed that sweet Caden Fair past away last night in the loving arms of his parents. Caden was 3 months old and had an even rarer form of Trisomy 22 than Makily's. Like Makily this sweet baby has touched many hearts and lives and will be remembered forever...Sleep peacefully sweet Caden...I pray you are watching over our Makily.
Here is a link to his site:
http://www1.caringbridge.org/mn/cadenfair/

Monday, August 1, 2005 11:19 PM CDT

Makily is getting over her NASTY cold. I am so relieved. She still has a cough but it is ALOT better. I havent had to give her any breathing treatments since Sunday morning so that is definitly good! I have been rubbing Vicks Baby Vapor Rub on her chest at night before bed and it seems to help. She is taking her feeds well again and that is ALWAYS good....it seems like we get her gaining weight and she gets sick or has a problem with her G tube and then she looses weight...it's an ongoing battle.
I have gotten some congestion now so I am assuming the little stinker gave it to me! Oh well, it's partially my fault since Makily is still sleeping in the bed with me and when Allen is home she sleeps in our room next to the bed in her bouncy. After she is healed from her cleft surgery we plan on putting her in her own room at night to sleep. I am not looking forward to it but she does need some kind of independence from me...even if it is just sleeping in her own room.

Friday, July 29, 2005 9:54 PM CDT

Well for some reason today Makily is rather SNOTTY....she is coughing and her little nose is running like crazy. She has been very clingy and doesnt seem to want me to put her down....secretly I love it but I am starting to worry. She had a retching episode a little earlier so I am starting to worry that maybe this is the flu and she is trying to vomit. My poor baby. She has been really cranky but right now she has decided that SPONGEBOB SQUAREPANTS makes her feel much better...she had been doing nothing but fuss for about an hour...I put Spongebob on and she immediately stopped crying and has been watching that for about an hour now. She is such a silly girl! I just love her to pieces. Her appointment with the plastic surgeon is August 8th at 2:15.....it is her pre-op appt so hopefully that day they will tell me the date of her cleft repair. I am so ready to have this DONE AND OVER WITH.....

Monday July 25, 2005

Well we had a heck of a weekend. I told Allen that I thought for sure we had a dark cloud above our heads following us around! LOL My birthday was on Saturday so we went to Tampa Bay with Justin, Trish and little Cameron. Well as soon as we get there Makily's button pops out.....the balloon had burst...I didnt bring a spare. This was a lesson that SUCKS to learn the hard way. We call all over Tampa to see if we can get a new one...all the specialty pharmacies are closed AND the hospitals are insisting on seeing her there before giving us a button...I even offered to pay cash. Long story short Allen figured he could get to Ocala and back (3 hours) before we could actually get into the ER and Makily be seen. So he and Justin drive ALL THE WAY back to Ocala get the spare and drive back to Tampa. Well Makily's stoma had closed too much at that point and we couldnt get the dang button back in. I WAS SO UPSET. So we all pack up in the van...drive to All Childrens Hospital in Tampa. The nurse that triaged Makily really freaked me out because she said they may not be able to get anything back in that hole. Of course I started to panic. Anyway they finally take us back and ended up slowly dilating the opening with a foly 2 sizes smaller than her mic-key button. It takes longer to do it this way but I would rather them do that them bring in the metal dilators...that is a nightmare. We got it back in and things went fine the rest of the trip. LESSON LEARNED: NEVER LEAVE HOME WITHOUT A SPARE MIC-KEY BUTTON OR FOLEY CATHETER.....

Wednesday, July 13, 2005 9:32 PM CDT

Ugh I just typed all this entry out and for some reason I lost it.....I will just do it over!

Things are going pretty well here. A few bobbles here and there but over all we are doing good. Makily's G tube/button started leaking last week and then at one point it just fell out onto my foot...I was here by alone and have never had to change the button all by myself. Usually Allen is here and we scream each other.....oops I mean talk each other through it...he tries distracting Makily while I cry and put the new one in....it's rather pathetic...LOLOLOL. Anyway I was alone when it happened this time so I anxiously told myself I could put the new one in and not to panic...over and over...thankfully it went right in and Makily didnt even open her eyes (she was asleep when this happened THANK GOD!) Then it started leaking on and off a few days later.....after adjusting it several times and getting a new button altogether it seems to be okay now....keep praying it doesnt leak again.
Speech therapy is going great. Makily really LOOOVES Elon and they played together really well today. Makily waved BYE BYE twice today at Elon and her and I both flipped out....we couldnt get her to do it again but I will take what I can get!! She is eating more by mouth...her favorites are rice cereal with bananas, and sweet potatoes. She is still on Alimentum formula which is costing us an arm and a leg but I will pay whatever I have to in order to keep Makily happy and healthy. We may be able to start getting help with her formula through CMS (state insurance for medically needy kids). We dont qualify for any other help so we are grateful for any help that we can get. It's awful because they tell us if we drop the private insurance we pay for on Makily they will help us more but Allen and I want to pay for Makily's health care we just need some help....oh well. What do ya do!?
New things Makily is doing....over the weekend Allen was holding her and watching TV and she laughed on and off for a good 5 minutes....why we have no idea but we loved every minute of it...it was so darn cute. She also has learned to unfasten one side of her diaper....we are keeping a close eye on this one...I have a horrible fear I will walk in to her covered in stinky Alimentum doo doo! She also is trying to click her tongue....when you do it at her she smiles the biggest grin and tries to do it back....Poor thing doesnt have anything to click her tongue against but she sure tries....so cute. Her crying is getting louder and that is a good thing. It means her muscles are building up in her throat and airway so she is getting stronger. She has a soft, weak cry but it is louder and different now....Elon says that is a good thing so I am happy about it.
She has speech therapy again tomorrow and a 15 month well check so I will update again then....she gets shots...UCK!

Wednesday, June 15, 2005 1:39 PM CDT

I have delayed updating about this hoping that things would have turned out to go the way we had planned but unfortunately they have not. ---HUGE SIGH--

We got the cardiac clearance for her surgery last week and when we left the appointment I left a message with the cleft team and plastic surgeon. I didnt hear anything back so I called them on Monday. Dr. Steig's (the plastic surgeon doing the repair) surgical coordinator advised me that he is going to be out of town FOR THE ENTIRE MONTH OF JULY and then gave me an appt. for her pre-op for AUGUST 9TH!!! This is obviously a far cry from the 4-6 weeks he told us on June 1. I told her that Dr. Stieg had told us at our apptointment that he could do her surgery in 4-6 weeks and that he wouldnt even give us the appropriate bottles for therapy for Makily because he felt it was not fair to start her on something new when everything was going to change in the next 4-6 weeks with her mouth anyway. After her (his surgical coordinator) and I exchanged several WORDS she basically told me nothing could be done. I know that Dr. Steig goes on Mission Trips and does cleft repairs in 3rd world countries for free and I am thinking that is what he will be doing in July....I just wished he would have told me that at our appointment. If he would have told me it would be August or September I could have accepted it but he didnt.....-sigh- I have been in contact with another mother whom her son had his cleft repaired by Dr. Steig and she says that he is THE BEST in Florida and that she would stick with him.....(I won't go into what else we discussed ;-) So I have a call into the speech therapist on the cleft team to get the bottles and stuff so we can start working on that since it may be as late as September until Makily's mouth is repaired. At first I was VERY ANGRY about it and I hollered, screamed, cried and threw things. Then I realized that there really isnt anything that I can do about it right now and I want what is best for Makily. So I am leaving all this in God's hands and trusting and believing that there is a reason why Makily will be waiting longer for her repair.
Please keep us in your prayers.

Wenesday, June 1, 2005 7:06 PM CDT

***INSERT**June 1, 2005
We are back from the craniofacial appt. They want to repair Makily's cleft within the next 4-6 weeks. They raved about how well she looks and how much weight she has gained. They were happy with her breathing and respiratory health. Makily stared them all down and kept looking at her Aunt Elizabeth as if to say "Help, get me out of here!" Makily has to have cardiac clearance before any surgery is done. I knew that would be the case and so in the morning I am going to call The Congenital Heart Institute and set up an appointment. She is due for another echo anyway so I figured it would kill 2 birds with one stone. I will update again after I have an appt. with cardiology. Please continue to pray for her and our family. I have known about this surgery for a while now and wanted to get it over with...now that the time is almost here I want to RUN!

Monday June 13, 2005 7:04 PM CDT

*****AHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!****

Well I made a bajillion phone calls today about Makily's surgery. I felt like I was running in circles and right now things are not going like I had planned. I won't know anything for sure until tomorrow so I will update then....JUST KNOW THAT I AM REALLLLY MAD!!

Saturday, June 4, 2005 8:51 PM CDT

Makily has an appointment to see the cardiologist Thursday at 10:30 to have an echo and get cardiac clearance for her cleft surgery. Will update again after the appointment. I am praying that her ASD's will have closed up and they will be a non-issue.

Monday, May 30, 2005 10:06 AM CDT

Makily is starting to take well to oral feeding and I am so proud of her. I know it has to be so hard for her coordinating it all but she tries so hard and I just am in awe at her strength and resilence more and more every day. It seems like she enjoys sitting up in the bumbo and eating better than being cradled. I guess she knows she is a big girl now and big girls don't eat laying down!!! She ate quite a bit of sweet potatoes by mouth yesterday while sitting up and yes it goes everywhere she also gets alot down and that is what is important.

Tuesday, May 3, 2005 5:44 PM CDT

Makily's current medical diagnosis:

Emanuel Syndrome aka Partial Trisomy 11/22
Cleft Palate
Laryngotrachealmalacia
Hypotonia
Two Atrial Septal Defects (8.5mm and 3.0mm)
Severe GERD
Pyloric Stenosis
Recurrent ear infections due to cleft palate.
Mild Pulmonary Hypertension
Mild Cardiomegaly


Past surgeries and Hospitalizations:
April 1, 2004: SHANDS NICU x1 MONTH for meconium aspiration, severe pulmonary hypertension, pneumothorax and genetic issues.

April 23, 2004: First G Tube placement

July 2, 2004: Shands for surgery Pyloroplasty, Nissen Fundoplication and G-tube replacement.

September 20, 2004: Admitted to Shands for leaking G tube and dumping and retching. This ended up in a 4 week hospital stay and Makily in respiratory distress and on a ventilator for 3 days.

November 1, 2004: Admitted to Arnold Palmer's Childrens Hospital for leaking G tube (you read that right). G tube was removed and NJ placed.

January 20, 2005: Admitted to Arnold Palmer for surgery. Vent tubes placed in ears, laryngoscopy with broncoscopy, NJ tube removed, G tube replaced (yes again), skin tags on cheek and in front of both ears removed. Due to Makily's stomach being placed differently (most likely due to all the other surgeries) the surgeon ended up having to open her up instead of doing the G tube laparscopically.

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----End of History----