I can say that not much has changed in-so-far as what we know about little Liam, or how these next few weeks, months, and years are going to go. For the short-term, Liam seems to be doing very well, all things considered. At this point, he is still wearing his harness, which makes every already complicated newborn activity much tougher. Mom and Dad have gotten pretty good at diaper changes and moving the little guy around, but there is still a lot of frusteration with only being able to hold him comfortably in very few positions. He also cannot enjoy his things like his swing, bouncer, or car-seat because of the position his legs have to remain in. Our follow-up visit with the orthopedist is on 1/18/12, and our prayer is that he will be able to be completely out of his harness at that point. The doctor was fairly expectant that this would be the case, but no promises.
Once the harness is removed, and the fracutues healed, we are hoping that things will settle down quite a bit - we can start using a regular car seat, his swing, do baths, one person diaper changes, and enjoy more than position on the couch. So, therefore, one of our biggest prayers right now is that the healing in his legs will be fast and complete by our follow-up visit and the little guy can move on to the next step.
The next step will be casts, on both feet, to correct his club feet. Each week the physician's will pull his feet closer into the direction with a new cast, and then the following week this will be repeated. We're told this won't be a particularly painful process, just a lot of trips back and forth to Syracuse for his office visits.
Our daily routines are gaining some traction at home, both Erica and I are night owls by nature, and we are both really working on learning how to get ourselves to bed earlier to give more time throughout the night for the challenges before us. Any newborn would be challenging without a doubt, the frusteration is that activities like feeding and changing are two person jobs, so there is no real shift-sleeping in this household, we are both up a few times a night for the diaper changing and feeding. Liam is getting a little better at giving us a good 3-4 solid hours from about 4am on, and we're hoping to build on this in the coming weeks.
I talked with the county today about Medicade coverage to help with his upcoming medical expenses, I know that even with my insurance through work, with being at the doctors on a near weekly basis for the forseeable future, we are going to need all the help we can get. I've also applied for Family Medical Leave, which will protect my job and allow me the flexibility to be there for my son at his visits and any other special care he may need.
I have to say I felt quite overwhelmed this week as cards, notes, cash, gift cards, and checks have litterally flooded our mailbox here in Auburn. From people I know dearly, to those I've scarcely spoken with in years, have reached out to offer prayers, encouragement, and assistance. I hope that one day we'll have the time to catch up on our Thank you cards for each one of you, but please know for now how incredibely grateful our family is for all of your support. Our minds have been in turmoil about how we will ever get through these difficult days, but it seems every time I begin to feel defeated and think "how can we..." somebody else comes through with some more support and I have to realize "how can we not!" With the support of our friend, family, and church, I know that we can make it through. As I got to spend some time last night playing the piano with my son, and just now I listen to Erica in the other room singing to him I am encouraged and loving those moments, and really looking forward to more of them!
So, going into these next weeks, please continue to pray without ceasing for healing in Liam's bones, so that we get a great report next week, and the harness can come off. Please pray for Erica, as although her initial complications after coming home seem to be better controlled, she still has to wear a heart monitor for the next month, and do a stress test once she is healed, because there is some concern there. Finally, be in prayer for the sanity of both Erica and myself. We are fighting so hard to remain positive, enjoy bonding with our son, and not be defeated and depressed by our circumstances. I knew this would be hard on Erica, and it sure has. What I guess I never anticipated was how hard this would hit me. You know something is off when you can drop a fresh crazy bread in front of me, with some SU basketball on tv, and I can only manage to eat a few pieces. My stomache has been in a constant turmoil for two weeks now, and I really struggle to sleep when I finally get the opportunity to. I know I need to take things one day at a time, and not get too concerned about the days and weeks to come, but that's a real fight for me. Please just keep us in your thoughts and prayers, especially as I get ready to make the transition back to work next week on Tuesday.
Thank you again for all of your thoughts, prayers, gifts, and packages. It's been the difference between impossible and almost impossible - thank you so much. I'll try to get another update out next week after we get through our Wednesday appointments.
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