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.

Halloween 2011

We just entered the girls in a Halloween Costume Contest for our local newspaper. The winner gets a gift certificate to the place where we have our vehicle serviced. If you have a minute, please register and vote for Gwen the chef  and Samantha Grace the crab! It would be wonderful to have a few free oil changes since we run the roads for doctors appointments so often. Thanks so much for all your support!
http://mtairynews.upickem.net/engine/Details.aspx?p=A&c=40323&s=12527299&i=1&m=X#SD