Time continues to fly...
We are finally drying out after some pretty major flooding here in Arizona last week. Our family was very blessed through it. Despite the horrible time we are now having with mosquitoes, the power being out for a few hours, and the one day that we were not able to leave our home due to flooded dirt roads, things went well for us. We had many friends whose basements flooded and ceilings caved in with the amount of rain, so we feel very blessed. Arizona just isn't used to that much rain all at once.
William is once again cast free. He still has a lump on his arm, but the doctor assured us that this will
Jacob was home from school for a full two weeks with viral pink eye, or some type of eye infection. Throughout the course of the illness, we saw the pediatrician twice and the eye doctor twice. Jacob was in a lot of pain and having a hard time keeping his eyes open. His eyes didn't respond to any of the usual methods of
Spencer will be going in on the 29th of this month for a scope to check for Celiac disease. He has had stomach issues along with some other things that I won't go into right now for years. When he is eating clean, he does much better, but he still has some trouble. So a few months back, during a particularly rough time for him, I decided to talk to his pediatrician and have some blood work done just to be sure everything looked okay from a medical stand point. Everything came back fine except for the Celiac panel. One piece of that was abnormal. The pediatrician suggested that we see a GI to see what he thought about the results. We have a great GI that we trust, so I took Spencer to see him. He said it could be Celiac disease or just intolerance to gluten. The only way to know for sure if it is true Celiac is to do a scope and biopsy. Depending on the results from that, we may be trying a gluten free diet for a few months. That will be a new one for us, but at this point, I am willing to try just about anything to bring that boy some peace.
Spencer has also joined cross country this year and is loving it!
The date for Bryce's hip surgery has been set. November 19th is the date. We knew this day would most likely come sometime and luckily we have been able to hold it off as long as we have, but unfortunately the time has come. About 3 months ago I took him in to his Orthopedic appointment and they took x-rays like they have been every 6 months since he began regressing. It took me by surprise when the doctor came in and said that his left hip has now grown 50% out of the socket. It’s a really long story, but basically they are going to have to go in, cut the bone and place the ball back where it belongs. The right hip is out as well, although not quite as far, so he will have both hips done at the same time.
A few weeks ago, Bryce and I flew to Utah to Shriner Hospital for a second opinion. Today, John and I went in to our orthopedic surgeon and asked a bunch of questions. After lots of praying, research, and evaluating, we know that this is what we need to do for Bryce in order to avoid major pain and other challenges in the future. It’s not what we want and I dread the pain he will be in and PRAY that this will not cause any type of regression for him, but it is the best of all the choices we have at this point. He will be in the hospital for 4-5 days and then will have 6-8 weeks of recovery. It is major surgery and we would love any extra prayers at that time.
Bryce is also dealing with some GI issues. At his last appointment he had lost almost 4 lbs since April! He is now back under 40 lbs. It’s frustrating because it feels like it took us forever to get him over the 40 lb mark and now we have fallen below once again. We are not sure why this has happened, but they have upped his calorie level to 1600 cal./day hoping this will help. I am still doing a blended diet and that seems to be doing great things for him on a neurological level, so hopefully we will be able to keep that up. Since going in for that appointment 2 and a half weeks ago, Bryce has thrown up twice while at school. We aren’t sure why, but that is not going to be helping his weight issues, that is for sure. He and Annalise go back in for a weight check on the 3rd of October.
Although Annalise gained weight, she was only up 3 ounces. Not enough for a 5 month period, so I am adding calories wherever I can to her food. Thankfully she is still eating by mouth, but has to have things cut small and soft or she cannot manage it. She fatigues very easily when eating. She loves yogurt and luckily a lot of oils and other good calorie dense foods can be added to that. Smoothies are great as well.
She also went to the orthopedic CP clinic today. Her dystonia has gotten worse, but there isn’t a whole lot we can do for that right now because she is still so young. She will be getting a better, more supportive wheelchair and they would like me to bring her there for an extra hour of PT once a week for a few weeks to try a few things with her that might help her gain more strength. That is going to be an extra hour drive to and from the hospital weekly. Hopefully it will be worth while for her.
Some super exciting news for Annalise is that she will be getting a wish granted from Make-A-Wish in the near future. Her wish fairies came last Sunday evening to bring her (and the rest of the kids) some small gifts and to find out what her one true wish is. Her wish is to swim with the dolphins. A pink dolphin to be exact! We aren’t sure the pink thing is going to work out, but somehow they are going to make her dream come true. We are just waiting now to hear if they are able to grant this wish and where it will be and then we will pick some dates for the actual adventure. It’s nice to have something fun to look forward to. Bryce’s trip was amazing and I’m sure this one will be too!
Well, this post has gone way longer then I had planned, so I will end for now. It is now almost midnight and we have a big day of fun stuff planned for tomorrow.
