November 27- Almost 20 months

We are visiting the orthopedic doctor today for Sam's CP. We should be having Botox again in about a week to loosen up her legs. The nice thing is that her appointments are getting less frequent for the most part. In September Sam had a seizure at home that lasted about 2 hours before we were able to get it stopped at the hospital. That gave us about a week stay in the hospital. Overall she is just amazing. She can crawl. She is tryin very hard to stand and walk during PT. She says several words now, her favorite being doggie. She loves music and doing whatever Gwen is doing! Just thought I would send a quick update of praise on just how great our God is! He has blessed us so much more than we deserve!


At our visit to see the doctor we had to make the decision to allow hard casts to be placed to get her ankles to get to the right angle and to correct her feet from constantly pointing. So when we go for Botox injections on December 12th, they will put casts on her legs that she will have until the Friday after Christmas. Please pray that she can handle waking up from the being put to sleep with casts on her legs. The good thing is it won't be too long and it should help her not to slip out of her AFO's like she has been. Just say a prayer that the neighbors don't hear screaming constantly for a few weeks until the things come off!  

August 19, 2012- Day 3 of AFO's

As a parent you learn that there are times when things just don't go as planned! The last few days have been a little trying with these new leg braces. We didn't order the shoes that went with the braces because they "looked like old lady shoes" (Travis' words) and because the guy told us that we could use regular shoes a size or two bigger than she was wearing. This shoe thing is going to be an issue... The braces and the shoes are way too heavy for her little legs. Many moms posted that the orthotic shoes are the same way and recommended Converse. They untie a lot lower, the material gives more and they are not ao heavy. We are ordering some but wish we knew if we should or 1 or 2 sizes up. So right now she doesn't cry the whole time.... just a large percentage of the time she is in them. It was a little better this afternoon. I stayed home from church this morning to get her in them. With the amount of time she needed to be in them today and the fact she can't sleep in them yet, she had to be in them before nap time so it was either take her to the nursery where she would cry or just stay home where I could distract her with TV. The great news is that she has stood by herself without touching anything for a few seconds in the braces. The muscles in her legs just aren't strong enough yet to keep her up. Just like the Rascal Flatts' song.... The good Lord gave us mountains so we could learn how to climb! It will all be worth it in the end!

August 17, 2012

The leg braces have arrived! The first day she had to just wear them for an hour. Then tomorrow we go up to 2 hours and so on until she is wearing them most of the day including while she sleeps. Well she cried when they put them on, then settled down and watched tv. About 20 minutes later she started fussing on and off. I hope she gets use to them or by the end of next week we are going to have a really crabby girl. I just feel blessed that they look so much better than they use to! The botox injections have done wonders for the tightness in her legs! Overall she is doing Great!!! I am so thankful to God in the work he has done in her!

July 26, 2012- Almost 16 months

We have been having a great summer! It has been so wonderful to be home with Sam and Gwen. I have seen such a change in Sam's abilities this summer. Last week she started crawling. When she wants to get from a crawling position to a sitting position and her right leg doesn't cooperate, she will actually take and pull her toes so that her foot will go the right way. It is really sweet. We saw the specialist for the stiffness in her legs on Monday. She wanted her to get braces that she will eventually need to wear almost all the time and Botox injections in her hamstrings and in her lower legs. She had an opening for Wednesday so we went ahead and brought her back down yesterday. They had to put her to sleep which is always hard on her. On the way home, driving down the highway she got sick in the car. Other than that she seems to be doing quite well since she has over 40 pricks all over her legs. She is still crawling everywhere. I really hope that with these new treatments she will be up and walking in no time! She is such a sweet girl. She hugs my neck when I get her everyday after her nap and makes the sweetest noise of contentment. Gwen and Sam are as close as ever. Gwen is like a second mother to her. She is the best big sister! I am so very blessed. When I am feeling down from time to time I just remember just where God has brought us. My mood changes instantly because my heart just fills with gratitude. Just in case there is a parent of another child who might be going through a similar situation, I thought I would post photos of what her legs looked like after the injections. I didn't expect so many injection sites but overall it seems to be working just a day out from the procedure. All of this gets scary at times but I have come to realize that we are not alone.

July 4, 2012

I know it has been a very long time... I am sorry. So many people have asked when I was going to post again. I have a hard time finding time for anything these days. I post on Facebook often because I can do that quickly. My blogs tend to take a lot longer. Well Sam is now 15 months. Can you believe it? So now that we have hit a year, we are starting to see more of a divide in Sam's abilities and other children around her age. She is still not crawling, however she really wants to. You can't put her on the floor without her instantly going to a crawling position but her legs just don't like to cooperate. Actually last night around 3 in the morning she must of woke up, sat up and got into that position. The problem is that she gets stuck so when I woke up from her crying I found her stuck in that position. It bothered me because I was unsure of how long she had been there since I am not the lightest sleeper. She is making some progress on standing for very short times (close to a minute). She still gets in her stander several times a day to strengthen her legs. She loves it. Her favorite show is Yo Gabba Gabba. She gets all excited when it comes on. She loves bubbles, riding in the wagon, swinging and doing anything with Gwen. We are going to see a specialist for the increased tone in her legs at the end of the month. I hope that she will be able to do something that will help Sam in some way. I know she gets really frustrated. Here are some photos. Thanks so much for all your support and prayers. It was about a month ago when I realized that I had so many pray requests that I was forgetting to pray for Sam's legs and head daily. I pray for my children daily but I was not praying specifically for their needs. As always I give God the glory for all of the accomplishments for Sam. I remind myself daily, "They said she could be on a feeding tube her whole life." So blessed God has brought her so far. Have a Happy 4th Everyone!

ONE YEAR!!

I had posted on facebook the day of her scans the great news but got too busy to make a new blog post until now. Her scans came back incredible. Sammie Grace has had 9 MRI's since August, all of which showed the cyst around the same size. The last scan before the one in March was in December. I am so happy to share this photo. This is the before and after....

WE ARE SO EXCITED!!!!! We also found out in our March visit that brain tissue was moving back into the space in her cerebellum where the 2nd shunt was placed because of excessive fluid back in August. Her neurosurgeon said that he couldn't be happier with her scan. This was the biggest blessing. People have asked what happened to shrink the cyst this much and my only answer is God. The entire week before this last scan I was so worried. I couldn't sleep and my stomach stayed in knots. On the way down I was just crying and I asked God to either make it where we would do surgery to take care of this so that I could stop worrying every time she sneezed that pressure was building up OR just to give me peace. I can honestly tell you PEACE is exactly what He gave me.  So we celebrated her first birthday with such joy this year. It was emotional to see just where she had come in a year. She loves sweets so it only took her a millisecond to dig into her cake. Here is one of my favorite photos...

She actually spent her first birthday sick with a stomach bug, so I was so glad we celebrated the week before. She is still not 100% back to normal but she is getting there. She has found out that she likes to make noises with her tongue. We have spent hours communicating in Sam's new tongue language. I had to record it because she is just too cute. 

So she still is not crawling or walking or standing on her own. She is however sitting up on her own, feeding herself, drinking from a cup by herself, and now says DADA, MAMA and BABA. Gwen is about to die to hear her name or some form of name come out of Sam's mouth. She can also roll over and get from a sitting position onto her belly. If she can get her strength back from being sick, I think she will be on the move in no time. I originally started this blog to not only keep people updated but also to post for other parents who might one day go through some of what we have gone through in Samantha's Journey. If you are reading this and you are faced with similar situations, know that miracles do happen, life is a gift and enjoy every moment. I look forward to the day I can post a video of her walking! Thanks so much for your continued support and prayers. God is Good... All the time!

March 4, 2012 ~ 11 Months! Can you believe it?

So we are doing good and life is keeping us busy (This is why I haven‘t posted in a while.) Sam is doing well. She now has a stander that is on loan through her PT and she loves it! She still isn't mobile but she really wants to be. She does a great job of sitting up unassisted however you can't go far because if she gets herself scared she starts to go stiff and ends up falling over. I took two steps away from her the other day to get a toy and she fell over. I felt horrible! She has a hard time changing postions herself. She does try her best when laying down to get in a sitting position but she is not quite there yet. They have told us not to keep her in her exersaucer for long periods of time because it actually will cause her legs to stay stiff. The stander allows the her weight to be distributed differently where she can start to build muscle and strength in her legs to help her eventually stand on her own. She loves it! The picture is below. She has an MRI and Neurosurgery visit on the 15th of this month which will be to check to see if the cyst has changed. We are just praying for a smooth visit. So thankful for the past 11 months. Every time I look at my sweet girls face I am reminded of just how amazing our God is! Will post again after her MRI.

January 30, 2012- 10 Months

I was taking some photos tonight and just felt a rush of happiness wash over me. It really hit me when I was going back through old folders on my computer of Sam this past year. Here is a video of her the day she was born.

March 31, 2011

If you look closely you can see the darkness on her forehead. That was from the pressure on her head at that time. It went away after she had her first surgery. Here is a photo of her with the external drain when she had the three week stay from the infection....

April 2011

Here is a video of her today....

God is AMAZING! I don't know where I would have been this past year without Him! The love and support He has sent us through so many of you completely moves me! SO VERY THANKFUL..... SO VERY THANKFUL!

January 16, 2011

Sam loves to grunt. This is what we do for fun at our house!

January 11, 2012

Well I just read my post from January 4th of last year. There was so much worry about what would happen in the coming months. God has richly blessed our family with Samantha. I know it has been a while since I last posted but life has been a little crazy. Right before Christmas, Samantha got sick and started having some strange behaviors that made us fear that her cyst was growing. We had an MRI and shunt series done but found that the cyst showed little change. Christmas and New Year's at the Bode house was more than I could have ever asked for. I often got emotional thinking of just where we have come in the past 12 months.  Samantha turned 9 months at the end of December and it is strange to think she will be turning 1 very soon. She smiles all the time. She loves to stick out her tongue at people and has the cutest laugh when Gwen plays with her. She says DA DA and UH OH. She loves it when you repeat what she says. She has just started to not scream her head off when she is placed on her belly and will hold her head up for a short time. I am not sure if this was a delay because of the shunts, extra fluid in the 4th ventricle, being spoiled or all of the above. She doesn't yet sit up on her own completely but she will for brief periods of time before she starts to fall to one side. She will go on her hands and knees. With a lot of help she can even start to crawl toward an object. PT completely wears her out but we are seeing improvements. She still keeps her legs very stiff most of the time. At our appointment with Neurology this week we were told that Sam does have Cerebral Palsy. Her CP is primarily in her legs from the increased tone. Most likely we will be looking at medication, shots and/or braces for her in about 3 months. We were told that we should be prepared for several years of PT. When I asked her if she thought she would walk she said that she thinks that she most likely will but with the help of some kind of assistance like braces. I asked her if she would outgrow this and she said only time would tell. It just depended on what the actual cause is that was not allowing the connection to be made correctly between the brain and the legs. I had a feeling that this diagnosis would be coming but actually hearing it was still a little bit of a shock. I left feeling numb and emotionally conflicted. I was upset with myself for being upset because I know that she is already doing so much better that what we originally expected. I guess it is just part of the process. Every mother wants the best for her child. I just don't want her to have to struggle. I do know that whatever comes her way, God will see her through it. I was going to load a picture of her tonight. When I took it I didn't even pay attention to the wall plaque but looking at it now it game me a little peace.

Thank you so much for your continued support and prayers for our sweet girl. May I never have a moment were I take for granted just what a blessing both of my precious girls are.