The move has been harder than I expected. Like I said I don't get out much so it has been hard to reconnect with people and to build a new support system. But luckily we are not in a brand new place where we don't know anyone! We do have old friends who have been willing to help when needed. And we have fantastic neighbors! We do love our house and our neighborhood. Ben loves his school. Transferring medical care and doctors has been way harder than I expected. For one we had, in my opinion, the best pediatrician ever. We miss our pediatrician and her office so much. I wish we could have brought Dr Shah and Kalee with us! We also loved Children's Hospital Colorado. I have never heard a bad thing about Children's Hospital of Philadelphia but honestly we have not been having the easiest transition. It is hard to feel like I am not getting my kids the best medical care that they need but yet I don't know how to fix it. At Children's Colorado and our pediatricians office we always felt like our kids were important and we were listened to and that the doctors were going above and beyond to make sure our kids were healthy and getting what they needed. And I don't feel like that here. I feel lost in the shuffle but because we are new to these new offices I don't know how to get out of the shuffle. Does that even make sense? I don't know.
So how are Micah and Maelyn doing? They are doing well...
Micah is a pretty typical 4 and a half year old boy! He is full of energy but probably over exerts himself everyday and then crashes due to his condition. But we are so proud of him for how much he is starting to understand his own needs and limitations. Ben and Micah have both been asking a lot of questions about Glycogen Storage Disease and learning about genetics. They are also starting to be able to pronounce it! (Micah used to call it Magazines Storage!) Micah will now say no to some sugary things because he knows that they are not good for his belly. And he is starting to come ask me for protein when he is feeling tired. He is still on his corn starch regimen where he gets it at bed time and in the middle of the night. He has only been seen at CHOP once for a new patient visit, so his doses have not been changed. We are still trying to figure out exactly how to get is annual liver ultrasound done which was due in November. We have also been trying to get him on Glycosade, the only medication for GSD, however we are having issues with insurance/manufacturer/distributor. You know, the US medical system cycle. No one else would think anything is wrong with him but as his mother I worry and notice little things. He still has his little belly from his distended liver and he is very sensitive. But he also still has a smile and giggle that could melt any heart!
Speaking of hearts, Maelyn is doing well but we are definitely ready to get this next surgery over with. Moving to sea level last summer was great for her. She did really well. Then this winter she started to struggle a little bit with energy and breathing. Her oxygen seemed to stay at 80% but she would get out of breath very easily and would say that she was dizzy when she did any physical activity. Once the humidity returned this spring she seemed to bounce back and was doing great! We spent the spring getting outside and going on vacation! We went to the beach and the lake and to grandparents houses. But then the heat hit and she is not doing as well this last maybe month. She is tired a lot and again can't do too much physical activity without getting out of breath and needing to rest. She often needs to be carried or in the stroller. She will run around and play but only for a couple minutes. This time, unlike the winter months, her oxygen has seemed to go down little bit. She is mostly in the %70's, and if we get a steady %80 it's a good day. Her coloring last summer was much better. This summer she is back to being more purple-ish. She just looks like she is cold all the time. But surgery is officially scheduled. Which at this point is a relief. This is the big surgery. The one that we've been waiting for since she was diagnosed three and a half years ago. This is also the last step, the last big surgery, unless something happens. After this, the rest of her life is a wait and see kind of deal. Once she is recovered she should be fine, great, normal, until her body decides it can't handle it. But we are so incredibly hopeful that she will continue to live a normal life and that her body will do great. There are people living very long lives with this now and Maelyn has done nothing but great so far.
Surgery is scheduled for August 1. We will go to Philadelphia on June 30 for her preoperative appointments. June 31 she will have her sedated MRI and cardio catheter procedure and then will be admitted to the hospital. The next morning they will take her for surgery. We are expecting to be in the hospital for a week, as long as there are no complications. My parents are going to come stay with the boys at the house but Nora still will not take a bottle and isn't sleeping through the night, so we don't know exactly what we are doing with her.
Please pray with us that; Nora would take a bottle/cup. That plans for the hospital stay would fall into place. That Maelyn would stay healthy leading up to the surgery. That the boys would be able to ask questions and understand what they need to in order to help Maelyn through this. That Maelyn would be able to understand the need and importance of this. For Maelyn's emotional well being. That the doctors/surgeon/anesthesiologist/nurses would be fully prepared for Maelyn. That God would go before us and prepare the perfect outcomes. For Maelyn's recovery, all of it, in the hospital and at home. And for Tim and I to remain strong for our kids.
We know that God is carrying us and our children. That he has a plan and a purpose and a future for all of us. And because of that we know that your prayers are what is sustaining us.
