Faith & Graeme- Sibling love!

So with a few extra minutes today, I will take the time to update:

I am going to try my best to keep the website updated but please forgive me if my posts aren’t as frequent. Life is a bit hectic right now with a newborn baby and a 2.5 year old with special needs. Not many spare moments to catch my breath, let alone time to get on the computer and write a post. Honestly, if there was and both kids were sleeping I think I would opt for a nap!

With that being said, I am so grateful for the two beautiful children God has blessed me with! Graeme is about 5.5 weeks old now and is doing well. He eats often, likes to be held, and continues to maintain his serious face. I call him my “little man” as he looks so grown up at times. He is very interesting and I love watching him take in the world! He is pretty laid back but can be pretty vocal when he wants your attention. He is a little sweetheart and I love him so much!  I think sometimes he looks at me like I am crazy, but I can’t blame him at the same time! I can’t wait to see him interact with Faith as he starts to really realize she is around.

Faith seems to notice Graeme’s cry and is probably starting to realize that someone else is getting some of mama and daddy’s attention. It has been hard with me not being up to pick up and carry Faith since I had the c-section. My doctor really wants me to wait the full six weeks especially due to Faith’s tone issues. I am anxious to get clearance for lifting so that I can feel more connected to Faith again. It has been very challenging trying to establish a balance between the two children. They both need so much attention and often at the same time. I am sure that I will find that balance over time but there are many adjustments for all of us right now.

Faith has really struggled again since her recent illnesses when she was hospitalized. The last day or so has been much better but it seems like her getting so sick really caused her to regress. She was doing so great before the hospitalization and lately it seems like she is right back where she was before we started the Baclofen around Christmas time. I have had many days where she just cries and screams with no real apparent reason. She did end up with an ear infection about a week and a half after she got home from the hospital which most likely contributed to some of the fussiness but we don’t feel like it should still be making her seem so irritable. We know that with her cortisol deficiency any type of illness(stress) on her body really takes a toll. I’m sure Faith’s little body is just fighting to get back to her 100%.

Faith has about three months left with the state early intervention program and then all of her services will transfer to the local school district. We have diagnostic testing scheduled for a few weeks from now to confirm all the services she will need such as OT, PT, speech, hearing, and vision therapies. Then, we will meet with the school district for her first IEP meeting which will determine her education plan. Lots of changes ahead! Please pray that this process goes smoothly and Faith will get everything she needs at school to help her reach her full potential.

Thanks for keeping up with Faith’s progress! Hopefully, I will have another update soon!

Keeping the faith,

Bridget

I was able to come home with baby Graeme on Friday but we have had to take precautions to ensure that he does not get RSV. I was not able to visit Faith in the hospital and Mike stayed with Faith at the hospital and avoided contact with Graeme by not coming home. Mike did an excellent job of managing everything with Faith. It is hard enough taking care of Faith when both of us work together so Mike really had his hands full. Faith had many nights of non-stop coughing, little sleep, and a great deal of irritability and discomfort.

Fortunately, Faith was discharged from the hospital last night since she no longer needs to be on IV antibiotics. She is still not able to come home as we cannot take the risk of Graeme being exposed to RSV. Mike and her are staying with family for now.

Faith seems to be doing a lot better. I have been calling Mike and talking to her on the phone and she seems to be getting back to herself. She is smiling more again and Mike said she even started giggling today. She is still on antibiotics to treat the pneumonia and UTI. We are hoping and praying that we can get her healthy and keep her healthy. She had been doing so well before all of this!

We are extremely grateful for our family and friends that have been helping us through the challenges of having a sick child and a new baby. We truly appreciate the extra help with Faith and Graeme, the delicious meals and snacks, lawn mowing, prayers, etc. It means so much to us that so many people love and care about us so much to offer and provide their help.

We look forward to all being together at home and for Faith to meet her new little brother soon! God has answered many prayers this past week and I am just so grateful for so much!

Keeping the faith,

Bridget

This is a picture of Faith on St. Patrick’s Day! Faith is continuing to stay healthy and happy! We are so thankful for all the improvements and love seeing her doing so well! Faith is now 2.5 years old! She is growing well length wise with the help of growth hormone and getting close to 25 lbs weight wise. Development is still very slow, but Faith continues to work very hard despite her many challenges. We just love her more and more everyday and thank God for getting us to this point!

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It seems that Faith is really recognizing our voices more consistently and that we are making some progress with receptive language. It is very subtle at times but every little indicator means so much to us. The other day I had to call Mike at work and I turned on the speaker. Mike said, ” Hi, Faith!” and she immediately got a huge smile on her face and just lit up.  Another time in the middle of the night, Faith had woke up and was upset. Mike went in and said a few things to reassure her that she was ok and she immediately stopped crying. Both of these situations gave us some reassurance that Faith is making progress. One thing I can say as a parent of a child with special needs is that I don’t think I will ever take anything for granite, no matter how small or insignificant that it may seem to other parents. Every little thing that Faith does to show progress is a blessing to us! We realize how every day we have with Faith is a gift and every smile and cuddle are the highlights of each day.

We have been trying out a kid walk with Faith. This piece of equipment is a great way to get her standing and allows more movement into her day. She is doing really well in it and we are hoping that the early intervention program will help us get one for Faith to use long-term.

Faith in the kid walk

Faith is growing well and much healthier overall! We continue to pray for progress with her development. We truly appreciate all the love, support, and prayers from family and friends along our journey!

Keeping the faith,

Bridget

We are so thankful for this progress! I smile so much just watching her smile! I love her smiles and laugh so much! Our goal for so long has been for Faith to be comfortable and happy! It seems that we are finally getting there.  We are trying to work on oral feeds more again, but not pushing it. Faith seems more interested many days so we are following her lead. A tablespoon is a tablespoon and if she can do that consistently without getting fussy and refusing then we are making progress. We are really trying to keep the experience positive and productive. Faith has also been allowing more oral stimulation which is a huge improvement. Hopefully, we can make some progress with tooth brushing soon! Baby steps for now!

Faith is gaining weight! She was up to 23 lbs at her last weigh-in. I anticipate that her weight will be up again at her next weight check. She is actually starting to get some chubby thighs! I think her endocrinologist will be happy when he sees her next week as he was very concerned with her growth.

We have several specialist appointments coming up but other than that fortunately doctor visits seem to be decreasing. Faith still has a full appointment schedule for all of her therapies. She has been doing really well in her sessions. We are hoping to see more progress in her development since she seems to be feeling better overall. There are definitely subtle things already happening such as Faith keeping her head up for longer periods of time.

Faith is getting ready to be a big sister! Check out pics of her in her big sister shirt:

Click on the link below to watch a video of Faith waking up happily from a nap:

Waking up!

I continue to feel so blessed to be Faith’s mother. I love her more and more everyday and thank God for bringing her into our lives and watching over her and protecting her!

Keeping the faith,

Bridget

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Faith on New Year's Eve!

We are hoping that 2012 will bring progress and resolution to many things for Faith! Faith is still struggling with reflux and gas issues that can make her very miserable at times. We are still trying to get her back to handling the rate we were at with her tube feedings before she got sick. We are slowing increasing the rate and so far she is tolerating the small increases. We had to switch her back to the lower calorie, semi-elemental formula temporarily since she was struggling so much. We hope to slowly transition her back to the higher calories formula soon. We are also looking forward to meeting with a new GI doctor.

We saw Faith’s neurologist last week and we are trying a new medication for her muscle tone. We are testing it out to see if it will help with the increased tone in her arms and the fisting she does with her hands. Since Faith has very low tone in her head, neck, and trunk it is hard to say if this medication will give helpful results. We have agreed to give it a try. It will be a long process as we are starting off at a very low dose and frequency.

Faith had an EEG a few weeks ago as were were concerned that she might be starting to have seizures. She was having episodes that included shaking and stiffening that were often triggered by a musical stuffed animal. The episodes also occurred randomly without any particular stimulus. We were able to catch one of the episodes during the EEG. At this time, it does not seem that these episodes are seizures. However, it seems that they are definitely resulting from something neurological and we just don’t really have any conclusive answers right now to what is causing them. The onset of the episodes was sudden and startled us as we had never seem Faith do anything like this before. We know that with the SOX2 mutation and Faith’s brain abnormalites that she is at high-risk for having seizures. Seizures often appear sometime in early childhood for children with SOX2. For now, we are keeping an eye on things and trying to get additional video for her neurologist.  We are also waiting to get more information from the EEG report as abnormal activity may have been documented.

It seems that we have regressed with sleep again. Faith’s sleep medication is just not working well many nights. She is doing lots of crying and waking very frequently. We used to be able to get 2-3 hours of sleep out of one dose when she was sleeping better. Lately, she is waking every 30 minutes to an hour. Some nights reflux is definitely not helping the night-time situation but the last few nights she doesn’t seem to have any identifiable discomfort that is causing her to be so restless and upset. The medication she is on still seems to be the best choice in terms of safe use for her age and medical issues so we don’t have many other options without taking risks that we aren’t willing to take right now.

In other news, we have some big changes coming this spring to our family as we will be welcoming a new baby boy! Faith will be a big sister! We will have our hands full for sure! We look forward to Faith having a sibling and we hope that they both will help each other in their development. We are very grateful that our baby boy appears to be growing healthy and strong!

Faith and Frosty!

Hope everyone has a great start to 2012!! Wishing you good health and happiness this year!

Keeping the faith,

Bridget

Faith truly has been the best Christmas present to us the past 3 years! Here are some pictures of Faith from Christmas Eve and Christmas Day:

Keeping the faith,

Bridget

Right now, Faith is still fussy and restless at times. Overall, she is doing much better and finally got some sleep. For about 3 days, Faith was unable to sleep more than 2 hours each day. Her sleep medicine wouldn’t even help so we were very concerned about this additional stress on her body and her ability to recovery from illness without adequate rest.

The last few weeks have not been very productive in terms of Faith’s therapy sessions. It is hard to know if this is solely due to her being sick or if we are just seeing more regression. She seems to be struggling more with sensory issues and is just more fussy during therapy sessions. We are hoping that we can get Faith back to her baseline soon. We will be following up with her endocrinologist, neurologist, and GI doctor in the next few weeks to address our concerns.

Feeling so helpless when Faith is struggling is one of the worst feelings and is so emotionally draining. We hope to learn ways we can help her.  We just want Faith to be happy and comfortable so we are hoping her team of specialists can help us achieve that for her. We are hoping that Faith will have a healthy rest of the holiday season and that we can make some progress in 2012! Thanks for all the thoughts and prayers during Faith’s recent hospitalization.

Keeping the faith,

Bridget

Faith will be continuing intensive therapy on an outpatient basis probably until the end of the year. Her sessions include occupational therapy, physical therapy, and speech therapy. So, approximately about 6 more weeks is the plan as of now. She will also  be continuing her therapies through the state early intervention program which includes her vision and hearing services. Right now, we are really working on sensory integration, oral feeding, and physical development. I really feel that if Faith can make some progress with her physical development that oral feeding will improve as well. We are continuing to strengthen her muscles and help her learn to manage her tone issues. It is also vital that Faith continues to gain weight for her overall growth and development.

We have a long road ahead with everything! There are no quick fixes. Faith is on her own timeline and only God knows what the future holds for Faith. We just want to ensure that we are doing everything we can to help Faith reach her full potential. Faith is working very hard as always and seems to want to do so much more than she is physically able to do. We hope that we can help her get to the point that she can use up more of that energy! I feel that I have learned some new things that I can work on with Faith as well through observing and participating in her therapy sessions with her.  I think getting full nights of sleep gave my brain a chance to rejuvenate and gave me the chance to take in new ideas. I always have plenty to learn and fortunately have so many great therapists to learn from in both home and hospital therapies!

Thanks for keeping Faith in your thoughts and prayers over the past 2 weeks! We were very fortunate that things went well and that Faith is now back home. Many families spend months in this type of hospital setting so we know that despite Faith’s challenges things could be a lot tougher. For now, we ask you to pray for continued weight gain and improvements in development for Faith.

Keeping the faith,

Bridget