Preschool starts tomorrow on her birthday. As I plan her party and get her stuff ready for school it hits me that I have been doing the same thing for years. Back to school preparing consisting of me adjusting her wheelchair, stocking up on diapers and pacifiers. Sadly walking through the school supply section of Target wishing I could buy her new markers and crayons and we could color together and talk about school starting. I try not to let it get me upset but it's so bittersweet.
Once again I buy birthday clothes instead of toys because buying infant toys is just too much anymore. I plan her party and pray I don't cry when I see other kids running around playing and enjoying life like she can't. I pray that she doesn't have a seizure while we sing happy birthday and that maybe she will smile a couple times. I pray that she knows how much we love her. It will be even harder this year because it's the first year we won't have family here to celebrate. Something about having family here makes me think for a moment things are normal, things are happy. We are so thankful to have another year with her and try to think of the happy moments not the months she has struggled.
Since her surgery in March things have been incredibly hard. Seizures were worse than ever and we spent every waking hour praying, begging, and pleading for some relief. We have cried more and been stressed out more than we have in years. We finally decided to add a new seizure medication in hopes that it would get her back to baseline. We also decreased the VNS and think it was the reason for all the gut wrenching screaming seizures. After three weeks, things are finally under control again. PRAISE GOD!!! We can leave the house again!!! We are so thankful but of course it comes with other challenges.
Once again I buy birthday clothes instead of toys because buying infant toys is just too much anymore. I plan her party and pray I don't cry when I see other kids running around playing and enjoying life like she can't. I pray that she doesn't have a seizure while we sing happy birthday and that maybe she will smile a couple times. I pray that she knows how much we love her. It will be even harder this year because it's the first year we won't have family here to celebrate. Something about having family here makes me think for a moment things are normal, things are happy. We are so thankful to have another year with her and try to think of the happy moments not the months she has struggled.
Since her surgery in March things have been incredibly hard. Seizures were worse than ever and we spent every waking hour praying, begging, and pleading for some relief. We have cried more and been stressed out more than we have in years. We finally decided to add a new seizure medication in hopes that it would get her back to baseline. We also decreased the VNS and think it was the reason for all the gut wrenching screaming seizures. After three weeks, things are finally under control again. PRAISE GOD!!! We can leave the house again!!! We are so thankful but of course it comes with other challenges.
With the months of horrible seizures she spent most of her days seizing and sleeping. Her appetite decreased and most of the seizures were so strong she would throw up during. We knew last week when we took her to the GI doctor the dreaded conversation would occur..gtube (feeding tube). I prepared myself and hoped by some miracle she had gained some weight over night but knew it would most likely be the main topic of discussion, and it was. Piper is so underweight that she is no longer on the growth chart. Our doctor is very concerned that without proper calories her bones and body will not develop as they should. The doctor knows we don't think she is ready for a gtube and suggested doing a high calorie diet for 2 months and if she gains 6lbs we will continue to feed her by mouth. If not we will need to get a feeding tube placed in her stomach provide her with nutrition.
When you only weigh 28 lbs, adding another 6 is a lot. My first thought was I am already having trouble lifting her, what will I do if she gains 6 lbs?! I will be working so hard to fatten her up just to work even harder to lift her. When she was little I remember thinking I won't have to worry about her being too big to lift for a long time, but it's here already. Even with working out and lifting weights it has become a big challenge for me.
There are a few good things that we learned, a typical 4 year old is supposed to get 1200-1500 calories a day and she is nowhere close to getting that. We just didn't know and now we do so there is plenty of room for adding calories. We met with the dietician and she gave ideas on how to increase calories without increasing volume.We think she can do it as long as we stay on top of calorie counting and finding recipes. This also means all of her food needs to be cooked by us to avoid added sugar and processed food which can increase seizures. It's another thing added to our already rigorous schedule and it means we can't be lazy. We pray she can gain this weight and that we don't go crazy trying to keep up with it all!
The next few months will be emotionally hard for us but we have great things to look forward to. Seizure control will allow her to go back to school and it is great for all of us. I have been able to start serving at church in the elementary program and it's great to be able to do that again. Justin is serving with the middle/high school students which he hasn't been able to do in 4 years. We are training for a marathon/half marathon in October and are so excited. We are in the process of buying a wheelchair van and should have it in a couple months. We have made it our own family tradition to go to the mountains every year for Thanksgiving and are looking forward to doing that in a few months. We have new friendships that are growing and it's something we have needed so much since we moved.
Thank you all for the messages and words of encouragement during the past few months!
When you only weigh 28 lbs, adding another 6 is a lot. My first thought was I am already having trouble lifting her, what will I do if she gains 6 lbs?! I will be working so hard to fatten her up just to work even harder to lift her. When she was little I remember thinking I won't have to worry about her being too big to lift for a long time, but it's here already. Even with working out and lifting weights it has become a big challenge for me.
There are a few good things that we learned, a typical 4 year old is supposed to get 1200-1500 calories a day and she is nowhere close to getting that. We just didn't know and now we do so there is plenty of room for adding calories. We met with the dietician and she gave ideas on how to increase calories without increasing volume.We think she can do it as long as we stay on top of calorie counting and finding recipes. This also means all of her food needs to be cooked by us to avoid added sugar and processed food which can increase seizures. It's another thing added to our already rigorous schedule and it means we can't be lazy. We pray she can gain this weight and that we don't go crazy trying to keep up with it all!
The next few months will be emotionally hard for us but we have great things to look forward to. Seizure control will allow her to go back to school and it is great for all of us. I have been able to start serving at church in the elementary program and it's great to be able to do that again. Justin is serving with the middle/high school students which he hasn't been able to do in 4 years. We are training for a marathon/half marathon in October and are so excited. We are in the process of buying a wheelchair van and should have it in a couple months. We have made it our own family tradition to go to the mountains every year for Thanksgiving and are looking forward to doing that in a few months. We have new friendships that are growing and it's something we have needed so much since we moved.
Thank you all for the messages and words of encouragement during the past few months!
