Well it has been 8 months since I have posted an update. I am going to attempt a short re cap of those 8 months.
Bryleigh has continued to amaze us. She has a very big vocabulary and an even bigger personality. She is quite the sassy little girl. She loves to make people laugh. She will tell us to "watch this" and will do something to make us laugh. It is so very cute. The other day she stayed with my mom for a few hours. My mom laid her in the bed to take a nap and told her to go to sleep. Bryleigh sits up, crosses her arms, looks at my mom and says "I don't have to". Now I know this is not the best of manners, and I do not condone this type of behavior but it is really funny. Of course when she does things like this I do not laugh in front of her and I turn my head if I cannot stop a smile but telling the story later is pretty funny. Sometimes when something happens she will put her hands up and say "seriously?" Of course it sounds more like "sessly". She is always singing her ABCs. She has gotten it down great now. She is also counting to 12. Okay so I could go on and on with stories and new developments. But I will stop so that this does not get too long. :-)
Bryleigh was diagnosed with dysphagia last year so we put her in feeding therapy. A few months ago she had another swallow study done and they said she only had small trace aspiration. She was not coughing when she would drink so I think the therapy did help her. This month we were able to stop her feeding therapy and will be doing speech language therapy. The developmental doctor recommended this. This month we went for a follow up with them and they said her receptive language was about 6 months behind and her other language skills about 4-5. I was a little shocked at that because she has such a big vocabulary and I am always being told by people that she talks really well. I am still pleased with how well she is already doing and am not going to stress about it because I know this does not define her and I am with her and she still continues to defy what her doctors say.
She was put on trileptal for her seizures awhile back. She does not have them often but they are still always a concern. Her last two seizures were focal seizures as where most of the others were absence seizures. I am not sure what brought on the change but everything about them was different. No vomiting, no staring, and longer. I have been keeping a log of every time she has a seizure. I try to put what we were doing before, what she ate, what she drank, etc. and I have not been able to connect the dots. The last three seizures were after she had been playing and was a little hot, sweaty and tired. I'm not sure if this is a connection but I am very conscious of how much she exerts herself now.
On May 17, 2011 Bryleigh had surgery (Cranioplasty) to repair the bone where her occipital encephalocele was. She had surgery when she was 7 days old to repair the skin but she has always had a soft spot in the back of her head. This really scared me because there was no bone protecting her skull back there. A craniofacial surgeon and her neurosurgeon performed the surgery together. They did a bone graft using bone from her skull to cover the hole. Her recovery was amazing. Her doctor was even shocked by how little this affected her. She was out of the hospital in 3 days. She was only there the 3rd day due to a stomach bug she got in the hospital. The surgery took 2 hours. She was back in the OR for 4 hours because it took the anesthesiologist 2 hours trying run the arterial catheter. Another anesthesiologist finally went in and was able to get it in her thigh. This caused Bryleigh more pain than the surgery itself I think. She had this in her leg for the first day. She would not move her leg, cried, and vomited a few times. As soon as the nurse took it out and got her bandaged up Bryleigh looked at her and said "thank you". She was sitting up and very talkative after this.
If I can think of any other updates I will be sure to post them. I have so many pictures from the last 8 months I had a hard time deciding which ones to put. I hope this post was not too long :-) Hopefully I will be back soon.
Posing for the camera
Her cute little smile
Her bubba is trying to teach her how to play baseball (notice the bat upside down, he said it was easier for her to hold
After eating Spaghetti
Going for a walk with her Choob Choob
On the way to the hospital for her surgery. This face explains how she feels about it
Morning after surgery.
Eating dinner the day after surgery
Eating breakfast the morning we got to leave the hospital
Wednesday, June 22, 2011
Well it has been 8 months since I have posted an update. I am going to attempt a short re cap of those 8 months.
Posted by Stephanie at 10:38 AM
Wednesday, October 6, 2010
Well no improvement on me updating more often. I seem to only update about every 2-3 months, so getting everything in one post is kind of difficult. Anyways, Bryleigh is still doing well and accomplishing new things every day. She is walking very well now and even trying to run. She has not got the running down to well because she normally ends up falling down, but she gets so excited and her eyes get so big when she “takes off”, it’s so cute. Yesterday Tyler was acting like karate kid and kicking his leg out saying haa-yaa (however it’s spelled) and Bryleigh started imitating and making the haa-yaa noise. She has been really good at imitating things lately. It is so fun watching her learn new things. Her vocabulary consists of a lot of words now days. Her favorite word is still “momma”. Every morning before she even sits up in her bed she is calling for “momma”. It’s the sweetest thing. Bryleigh had always slept in our room but when we moved in August she finally got her own room. I had a hard time at first but we have adjusted. Well I have adjusted, Bryleigh did not seem to be bothered by the change at all. I did have to get a video monitor so I could see her at all times.
She is a very bossy little girl and will scream at someone who does something she does not like. We have started to discipline her but she does not seem to be responding very well. I am sure consistency will pay off eventually.
In July Bryleigh was diagnosed with dysphagia. It is not a very bad case but it is still something that needs to be managed. We are putting a packet of Simply Thick in her cups. We have kind of skipped the whole sippy- cup thing and went straight to straws. She does not get choked up near as much when using a straw. One of the therapists recommend Vital-Stim Therapy. ECI does not provide this service so I had to find a home healthcare company who did. We had an evaluation with them and they tried the therapy on her and she did not like it at all. They got through about a minute of it and ended up stopping. Her developmental doctor did not end up signing off on it and her neurologist was not very supportive of it either. Bryleigh’s brain did not form correctly in all areas. The area that affects her swallowing is one of them. They said the Vital-Stim would not be beneficial to her because it would not “fix” the damaged area of her brain. So for right now I am going to hold off on pursuing it, but may look more into when she is older and will tolerate. It is said to not be painful, and every doctor has their theory on things and some of them seem to think it could help her. I have heard quite a few success stories with it too. For now we are just doing speech/feeding therapy.
In August she had 4 absence seizures. They lasted for about 3-5 minutes each. She did not have any difficulty breathing during them so we did not have to take her to the hospital. Her neurologist had us up her dosage of Trileptal. We met with him in September and he told us that the children with polymicrogyria are sometimes the hardest patients to get their seizures under under-control. For now I do not worry too much because she does not have them very often. I pray that it stays this way.
Bryleigh’s developmental doctor suggested that we take her for a hearing test just to rule any hearing problems out. We took her to a place where they tried the standard hearing test and she did not cooperate very well. She would not look at the direction of the noises and we were not sure if she was just busy playing and did not want to, or if she really didn’t hear it. They also put these things (sorry I don’t know much about this) in here ear to measure how her ear drum responded and they said her left ear did not respond well. Again, they said that it could be that she was moving so much it could not be accurately tested. Since the test was inconclusive, we are going to have an ABR test done.
Not updating for 3 months causes my posts to be very long so I apologize for the novel I am updating from work so I do not have many current pictures. The only ones I have are from my phone and they are not the greatest quality. With my rate of updating I will not be heard from until Christmas time! Wow this year has flown by! I will try for sooner. Maybe Thanksgiving!
Her sweet little smile
Running at the doctor's office
Walking to the house
Color time with Bubba
Posted by Stephanie at 12:09 PM
Wednesday, July 21, 2010
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!
Posted by Stephanie at 7:13 AM
Tuesday, March 30, 2010
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!
Posted by Stephanie at 4:00 PM
Tuesday, January 5, 2010
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!
Posted by Stephanie at 8:18 AM
Tuesday, December 29, 2009
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
Posted by Stephanie at 6:10 PM
Friday, November 6, 2009
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!!
Posted by Stephanie at 7:52 AM