Back with a Bryleigh Update

Okay well I am well over due for an update. I still read a lot of the blogs I follow but am horrible with updating my own. Bryleigh is 18 months old now. She is getting so big. She really has a fun personality. She is very sweet and loves to talk and give kisses. She has about 15 words (not counting family members) that she uses. We recently had a developmental appointment and they have her at 17 months for her language skills. Everything else is at about 14 months. I wouldn’t say she is a “walker” but she does take a lot of steps sometimes. She is really wobbly but in time she will have it down. Her therapist told me that the longer she crawls, the more muscle she will build up. She is about 26lbs right now. Her doctor said that she is in the 25th percentile for her height and 95th for her weight! The percentiles are suppose to be a little bit closer. For now we are just going to wait and see what her endocrinologist thinks. In time we may need to meet with a nutrionist to see what we can do. She said that since she has low muscle tone that her body does not burn the calories that a person with normal muscle tone would.
Bryleigh had her first seizure back in February. It was not a very bad one but still very hard to watch. The hospital said they thought it was a febrile seizure but her neurologist was not leaning towards that. He has always said he thinks she will have some sort of a seizure disorder. We opted to wait on daily medication but had some diastat just in case she had another. Well in April she had another seizure and that lasted about 15 minutes. The morning she had it I heard her spitting up in her bed. I picked her up and she could not sit up straight. I immediately thought she had something wrong with her shunt. I started to get ready to take her in to the hospital and she started seizing. About 5 minutes in to the seizure I gave her the diastat. I waited another 5 minutes and it did not stop so I called 911. They got there about 5 minutes later. We decided to put her anti seizure meds. He put her on Kepra. I noticed a change in her personality. She was very moody and would hit everyone. We talked with her doctor and he said that what we were explaining is a side effect of Kepra. We switched her to another medicine. I cannot remember the name at the moment.
Bryleigh had surgery in May to strengthen the muscle in her eyes. Her left eye would drift out sometimes (called exotropia). The ophthalmologist decided to do both eyes the day of the surgery. He noticed her right eye turning sometimes too. She did really well and healed very fast. Her eyes no longer drift out. She had a surgery scheduled in July to repair the bone where her encephalocele was. We decided to hold off on this surgery until she is about 2.5 or 3. They were going to remove bone from another place on her head and cover the hole in the back and go back later and remove bone from another place, split it in half and use one to cover the place where the removed it for the first surgery and put the other half where they just removed it. Her bones are not thick enough to split right now so she would have to do two surgeries. When she is 2.5 or 3 her bone will be thick enough to split and they can fix it with one surgery. So for now I have to be the nervous mommy and freak every time she bumps the back of her head.
She still has quite a few doctors but the frequency of the visits has gotten better. Although in the next month and a half she will have an appointment with her endocrinologist, a hearing test done, her 18 month check up, and a swallow study done. She chokes a lot on juice and water. She is not very good at using a sippy cup either. Her developmental doctor thought it would be a good idea to get the swallow study done to see if she is having a hard time with swallowing certain things. We may need to thicken her juice and water up.
I could write a lot more about Bryleigh but since I haven’t posted anything in about 6months I tried to cram as much as I could in this post. I will try and be better!


Silly girl. She got in the potty (yes it was clean). I am going to have to put something on them to keep her out.

Before her eye surgery

After her surgery. Her eyes looked crossed for about a week and blood red for about two weeks.

She loves talking on the phone!

Finally Im updating!!

Well as most of you have realized I am terrible at updating my blog. Just terrible. I always say I will get better but I don't think I will anytime soon. lol. I have wanted to post pictures but I lost my camera last month and need to get one really soon. Its driving me nuts. Bryleigh does such cute things and I want to capture them all but now I only have my phone which does not take great pictures.

Bryleigh has been doing good. She is starting to cruise. She is not quite brave enough to let go of what she is holding onto to keep herself to a stand but she is holding it one handed now. We are really in no hurry for her to walk. Her therapist told me that since she has low muscle tone, the longer she crawles the more muscle she will build up in her upper body. So for now I am completely content with where she is at. She is starting to say more words and can identify certain objects by name now. She loves her baby dolls. She hugs them and rolls around on the floor giving them kisses. Its so cute. She also likes to play with her brothers cars. And of course like any child, everything she is not suppose to touch. :-)

She went through a stage where she ate absolutly everything I would give her. And she never seemed to get full. I started to get worried she didn't have taste buds and that her body was not letting her know she is full to stop eating. But she recently stopped doing that.

She has gotten a bit of a mean streak in her at the moment. She likes to lean in to kiss you and then slaps you and laughs so hard. I cant help but laugh too but I need to stop that. lol. She also likes to head-but people which is kind of strange. She always has a bruise in the middle of her forehead. We are working on stopping that too. Also, if I am laying down in bed she will crawl over and grab a handful of my hair and yank on it. But i think it may be an age thing. (Hopefully, lol)

Bryleigh had a seizure on February 27th. We had gone out to eat for my birthday and she was fine when we got there. Then all the sudden she starting vomiting and then went limp, was not responsive, and got really hot. I took off out the door with her to get her to a hospital and she started seizing. It was only on the left side of her body. The hospital we were at called her neuro-surgeon and the neuro said to do a shunt series and if all looked good send us home. Everything looked good so we went home with the diagnosis of a febrile seizure. The next morning she was still not herself and i was still worried as to why she had the seizure so i decided to take her into the hospital we normally go to. They did the same tests over again called the neuro and sent us home. Then Sunday they called us back to the hospital and said that her blood work came back abnormal and they needed to re draw it. So back to the hospital we went. Her blood work came back fine and we were sent home with the same diagnosis. I was not happy with the diagnosis because when she had her seizure her fever was only 100.4 (she was teething). That is not very high. I made an appointment with her neurologist and he said he thought it could at the least been a complex seizure because it was focale (only on one side of her body) but thinks that she may be developing a seizure disorder (hopefully not). I opted to not put her on daily medications right now because we are still not sure what kind of seizure it was. He gave me a medication to give her to stop a seizure if she has another. If she does, I will probably start her on medication. He also ordered an EEG be done. We had that done last Wednesday. Still have not gotten the results. She no longer likes any doctor, as soon as they get near her she screams. Its so sad.

She will be having her encephalocele bone repair on July 6th. I am not looking forward to this AT ALL. But it needs to be done. She still has a big soft spot in the back of her head. With her being as active as she is it makes me nervous. There is no bone there to protect her brain. The area of the brain not covered by bone is the occipital area and that is where the vision takes place. Her left eye is still not as strong as her right eye so we continue to patch her right eye an hour of the day. Her skin is so sensitive it leaves a red circle around her eye for a little while after its removed.

Her developmental doctor and I have noticed that she turns her left foot out alot more than she should. She said Bryleigh may grow out of it but if not we will try using a brace to help her keep it straight. They recommended putting shoes on her more often. This is hard because she takes them off every time. But..I went to the store the other day and found a pair she cant get off :-). So we will see if this helps.

Overall her progress is great and we are so thankful. All the prayers and support Bryleigh and our family received we will forever be greateful for.

I better finish up, Bryleigh is screaming at me now for my attention. She doesn't have a low pitched scream its like a very loud shrilling scream. lol.


I posted two pictures from her birthday party even though it was almost 3 months ago, I just haven't updated in so long :-)


Bryleigh's birthday cakes!



She was not so thrilled about the birthday hat.



Bryleigh's first big snow!


She loves to hang her head backwards. This was before her EEG


After they FINALLY got the electrodes on for the EEG


Pretty head wrap to keep her from pulling them off.


After the EEG. She was not happy with the messy hair she had to leave with :-)


I wish I had some better pictures to post but these are from my phone. I need to get a camera ASAP!

Happy Birthday Bryleigh

Happy Birthday to my sweet little Bryleigh. What a blessing you have been to our family.One year ago today I got to see your sweet little face for the first time. I can not explain all the feelings I was feeling at that moment. God gave me the strength to handle every situation with grace. You have far exceeded the expectations that some doctors had labeled you with. I am truly grateful for that and feel so blessed. Every milestone you reach absolutly amazes me. I have learned to never take small things for granted because those are the things that sometimes matter the most. Thank you God for our little angel. She has truly made our lives wonderful!

Happy New Years

I hope everyone had a great Christmas. Bryleigh celebrated her first Christmas and it was a white Christmas here in Dallas. Bryleigh got lots of presents but she was more interested in eating wrapping paper. She puts everything in her mouth. Her babysitter calls her a little billy goat. On Christmas she learned how to pull her self to a stand using the couch. She now does this on everything. She has had her share of wipe outs and hit her head a few times. She does not seem to be phased by them because she continues to pull up on everything.
She has been crawling really well lately. She is really fast. She takes off to the bathroom every chance she gets. She also shakes her head no back to us. It is so cute. She waves bye bye and tries to say it, but it souds more like di di. I am just so happy with how well she is doing. She is an absolute joy to watch as she learns all these new things.
We may be making another trip back to Duke for another cord blood infusion I had a date set but had to cancel due to our schedules. But hopefully I can get something set up soon. My best friend Stephanie lives in South Carolina and is going to drive down to stay with us. She went to my wedding and that is the last time I have seen her. So I am looking forward to the trip.
Bryleigh will be 1 next Tuesday. I can not believe it has been a whole year! Time goes by so fast. I am so blessed to have her in my life. I look forward to the years to come to be able to watch her grow and learn new things.
I don't get a chance to post much but I get on everyday and read everyones blogs. I say every time I am going to be better about updating. Maybe this time if I don't say it I will actually do better :-) Hope everyone has a Happy New Years!!!

She looks so excited about the present. I took these pictures in this order and her face is just so cute!





Mommy and Bryleigh!

I couldn't get her to sit still long enough to get a picture :-)

Checking out one of her new toys

She loves to stand up now


Family!

Holidays are Nearing!

Time goes by so fast. I can not believe Bryleigh will be 1 in 2 months. My son Tyler turns 5 in 2 weeks. So this time around our house is very busy! We have birthdays to plan, and holidays to prepare for. But with all the plans I absolutely love this time of year. I cannot wait to decorate for Christmas, I think that is when my house is the prettiest :-)
Bryleigh is continuing to do great. She is crawling around the house, getting into sitting position on her own, and talking alot. She is very fascinated with the dog food and laptop. She will be playing in the floor with her toys and as soon as someone sits down with the lap top she is right there trying to get some play time in on the keyboards. lol. She goes after dog food everytime she sees it, and I could not figure out the fascination. So i let her make her way to it the other day and she did not eat it, just wanted to feel it and throw them around. She definitely lets us know if she does not like something. She will give us her pouty lip or throw herself backwards.
About two weeks ago Michael was dropping Bryleigh off at the sitter and he pulled her arms to get her out of her car seat (something I said NOT to do ALL the time)and her elbow pulled out of place. She was in so much pain and it was so sad. I left work and met them at the hospital. They moved her arm around and did something that put it back. That day she was very fussy and would not use that arm at all. I started to worry because the doctors said she should be back to using it normally within a few hours. But by the next morning she was using it and pushing herself up with it. That was such a bad experience. So needless to say daddy does not pick her up that way anymore.
Bryleigh had an ophthalmology appointment about 3 weeks ago and they said her left eye does not focus as good as her right eye. We have started patching her eye for an hour a day each day. She does not like when i put it on her so she shakes her head side to side so I cannot get it on. Once I succeed she is fine with it. We have to do this for 4 months.
Next week she has an endocrinology appointment. I am not sure what exactly they are going to do, her doctors have just suggested she go to one. The following week she has an appointment at Scottish Rite. Her developmental doctor referred her to be seen. I have heard so many great things about the hospital.
Bryleigh is still in ECI and I think it is helping her so much. Her therapist sees another little boy at Bryleighs sitter too. Every time she comes to work with him she will do some stuff with Bryleigh even if she doesn't have an appointment.
Below are some recent pictures of Bryleigh from my phone. Sorry the quality may not be great, I have a ton on my camera that are probably more clear but I am at work so I can not get to them.

Tyler & Bryleigh at the Arboretum in Dallas



Bryleigh's Halloween pj's she wore to her sitters!



My little bumble bee!



Just one of the big smiles Bryleigh likes to give!!

Monday Update!!

Hello Everyone! Its been awhile since i have posted an update. Bryleigh is still doing great! Since I posted last we have met with her developmental doctor and she has had an MRI (today actually).
Well I will start with the developmental doctor. When we went Bryleigh was right at 8 months. They have her gross motor skills adjusted to about 6 months and her cognitive is at about 7 months. Her receptive and expressive language is at 8 months. The last time we went saw this doctor Bryleigh was 4 months. The doctor was only able to evaluate her gross motor skills and language. She was not able to get a good idea of her cognitive because at that time Bryleigh did not track objects or look at anything. This doctor like all her others was very concerned with her vision. When we were in her office this last time she ws very surprised that Bryleigh could see. She said she thought that Bryleigh was blind. She said she has only seen a handful of kids make such a drastic change in their visual capabilities. Overall we were very pleased with the appointment. We go back in January to see them.
Bryleigh had an MRI and an appointment with her neuro surgeon today. She did great for the MRI. She was sedated which always makes me nervous but she did awesome. We met with the neuro surgeon afterwards to go over the results. The arachnoid cyst that they have seen on her previous scans had not changed in size. So no surgery for Bryleigh. I was so worried about this. They did notice that she did have some extra folds in her brain in the occipital area. This is due to the encephalocele. She said this could cause vision problems and/or seizures. Bryleigh has not had an seizures so this has not seemed to have any effect. I still have some researching to do. I will take the radiologist report and dissect every word so that i know exactly what everything means. lol I am not sure why i do this, but oh well, i just like to know everyhitng i possible can. :-)
Bryleigh has started saying mama. At least i like to think she is doing it intentionally. She does say dada on a regular basis. She has also started trying to crawl. She get on her hands and knees and rocks back and forth. She also can sit on her own for a few minutes. When she gets tired she just falls over. She has not figured out how to get into a sitting position on her own, but we are working on it. She is always smiling and always laughs at her siblings. She smiles for everyone, but her brothers and sister are the only ones she really cracks up for. Tyler loves making her laugh for people. She has 4 teeth completely in and another about to come in. She grids them together sometimes and its the worst noise ever. But she likes it. haha.
We are so happy with the progress she is making. She is such a joy. I get SO excited when she does new things, well actually even if she has done it before I still get excited, lol.

A Year Ago Today

One year ago today I was 17w3d pregnant. It was a big day for us. We were going to find out if we were going to have a little girl or boy! I knew it was gonna be a girl :-). We also found out the news that the little baby i was carrying was not "normal".
I remember getting up that day going into work being so super excited. I even dressed nicer for that day:-) I went to work for a few hours barely getting anything done because I was watching the clock waiting for my appointment. My mom and sisters were going to meet Michael and I at El Fenix after the appointment so we could tell them what we having.
Michael picked me up at work and we drove on over to the doctors office. The doctor started the sonogram and immediately told us he sees some things that he does not like. He proceeded to tell us that our baby had spina bifida, a lemon shape head, and enlarged ventricles. "It does not look good" is what he said. I looked at Michael and he just had a blank expression on his face, then i started crying. I did not know anything about any of the things he just said. He said it could be genetic, etc. So he said he could do an amnio that day. After he explained a little about what the baby had i remembered to ask what we were having. lol. I completely forgot about my reason for being there:-). He said he was going to call my OB doctor and have us go talk to her.
We went over to talk to my OB and she had absolutely nothing good to say. She just kept telling us how bad it was going to be, that the baby was in really bad shape, had alot of issues, we should consider terminating, etc. But we immediately knew that we were going to keep the baby and give her the shot at life she deserves. I asked my doctor to send me to another sono doctor for a second opinion and she said there was no need, that he was the best. She then sent us over to the NICU to talk to one of the doctors so he could explain more to us. He was alot more assuring about everything.
The next morning I woke up and just cried. I was so upset. I had already done a ton of research on spina bifida, etc. We called and made our own appointment with a specialist and were set to be in the following week. Within a few days I was feeling much better about it all. We finally went and met with the sono doctor and he said she did not have spina bifida but did have a lemon shape head, enlarged ventricles, and an encephalocele. I was so excited about her not having the spina bifida that I did not ask much about the rest. When I got home i researched some more. I scared my self to death looking up encephaloceles. They literally only put the worst case scenarios on the Internet. From there we just went about the pregnancy knowing my little girl was going to have some struggles in life, but we were willing to do whatever we could for our sweet little baby.
Today Bryleigh is 7mo3w old. She is absolutely perfect to us. She is doing so much better than i had prepared myself for. God gave me this little girl and gave me the strength to care for her and give her what she needs. I would not change our experience for the world. I thank God everyday that I did not listen to my fisrt OB doctor (I switched). I could not imagine our lives right now without Bryleigh. In a way I feel privileged that God chose me to care for a child with "special needs". Its hard to explain what I mean by that but I am sure some of the other mommies may know what I mean. Bryleigh is so special to our family! Every little things she does absolutely amazes me. Her being able to do things that others said she would never do makes it that much more special. God has been so great to us!