Philip had his physical therapy evaluation and it was evident as the therapist began that this was exactly what we and he needed. She’s been doing PT for 30 years and could look at Philip and tell us his reactions to certain movements before she did them. She was right every time. She was able to give us positioning advice, talk about stretches and tell us what should be the priorities for right now. She is also beginning the process of getting a new wheelchair that will better fit his positioning needs. This adaptive stroller has been great but it’s not what his body needs now. He definitely needs more support. Some of Philip’s contracture (a condition of shortening and hardening of muscles, tendons, or other tissue, often leading to deformity and rigidity of joints) may be getting close to the point of little change. This will happen more as the disease progresses. Of course, along with that can come pain. Please pray that he is spared as much pain as possible. We know the Lord can do that for him. There also will come a point when we will need to decide that we will stop trying to address certain contractures and allow them to take their course. One example is his neck position. Because of his shunt tubing, he has always preferred to look left, even from infancy. Now, the muscles and tendons on his right side are so tight that they will likely not be loosened even with stretching and exercises. In this case, we will try to adapt his new wheelchair to accommodate that position and will not focus on exercises to correct that. This, too, will happen with more joints as time passes. Pray we make decisions at the right time for his best interest.
I haven’t been looking forward to adding multiple outside therapies back into our family life. It places extra stress on each of us, adding weekly appointments for two children. But we were ready to do what they needed. However, the Lord was already taking care of this. The therapist explained that insurance would only cover 6 or so appointments, basically to teach me how to do the PT exercises, stretches, etc. This is perfect! I am very capable of doing these exercises at home and it eliminates an appointment from the week. I just had never been trained on what to do. Most of the time, it’s easy to get frustrated at how little insurance will cover but this time, I’m very thankful. We also have the opportunity to revisit every few months to evaluate his current status or new equipment needed.
We are continuing to raise the new seizure medicine he is on. He’s had a couple of break through large seizures or clusters of seizures but not nightly. The seizure we have seen is slightly different from those before so please pray we can monitor the seizures and make wise decisions about medications.
His congestion is slightly better right now. He only needs to be suctioned out about once a day, maybe twice. This is a much needed break for him…and us. I don’t enjoy using the suction machine either. Some of the congestion has been helped by the positioning the PT taught us to do. He is side-lying more and having tummy time so this allows his secretions to drain.
Philip starts school a week from today. I can’t believe it. Ben and I have decided to change Philip’s schedule to a full day at school. The original reason for a half-day was that he needed a nap mid-day and could not take one at school. Now, he will sleep anywhere and anytime he wants. Plus, he loves the extra interaction with teachers and friends. It is a help to me now as well with Joyanna needing more time and attention. Tonight, as I got him ready for bed I talked to him about going to school soon. He got visibly excited as I mentioned his teachers and friends from last year. That was neat to see!
Joyanna. Just pray for Joyanna. We actually talked to her doctor last week about decreasing this newest seizure medicine to see if it is what has caused such rapid loss of balance and concentration. This line of thinking started when things began to change so rapidly. It has not been Joyanna’s journey so far to regress so quickly so it didn’t seem quite right that she would suddenly. We just dropped 1 ml of dosage last Monday at the doctor’s suggestion and I think I can see a difference, but it’s so hard to tell. She is definitely using more words this week and walking better, but is sort of like a pinball again. Her concentration and focus has not improved. She climbed up on our bed today which she has not been able to do for a month or so. She did it without even thinking and with no struggles. Please pray for us and her doctor to have discernment. We certainly don’t want her to be a guinea pig, adding and dropping medicine back and forth. We know that we need specific guidance from the Lord to navigate this situation.
Her speech therapy went so well last week. Her therapist was pleased with how quickly she was navigating the iPad software. I wasn’t surprised. She’s been able to swipe pictures on an iPhone since she was between 12-15 months old. We have to monitor her with anything with screens or she can be glued FOREVER. She also responded well with color promptings and naming pictures. She is struggling with controlling her tongue during guided prompts (i.e., stick your tongue out, to the side, etc). We will have to work with her to maintain this skill as it will mean her being able to eat by mouth longer.
On that note, she had a swallow study done last week. The technician said she was swallowing normally. However, she does have reflux which is what her doctor wanted to know. Because of the issues with moderate dehydration, we are moving forward with getting her g-tube placed. The swallow study was just to determine what kind of procedure she would need, what kind of doctor she should be referred to. We will meet with this doctor this upcoming Wednesday and likely after that appointment will schedule surgery to have her g-tube placed. In case you weren’t with us for this part of Philip’s journey, Joyanna is getting this much earlier than Philip. He basically couldn’t eat anymore and it was definitely an urgent need for him. Joyanna will eat mostly by mouth still even after the g-tube placement but this will ensure that we can keep her hydrated. We are not even sure what all the issues are that are inhibiting her from drinking but this is the sure way to address it.
We are also praying about when and if we should put Joyanna in school. Philip went into school around 4 ½ and Joyanna is getting close to that but of course, that decision will be tailored to her needs and the Lord’s direction of course.
Ethan is cracking us up every day. He is talking so much, making sentences and asking questions. His current thing is, “What’s that noise, Mommy?” for everything, even if he knows what it is. It’s great!
I don’t always say a lot about Ethan but he is already a big help and definitely comic relief to many tiring days. I have to tell his latest funny story. He had some typical dry spots on his fingers below his nails where the skin is peeling. At supper last night, he got some sort of acid from his food (tomatoes, etc.) on those spots and was saying repeatedly, Ow, Ow, Ow! We said he could lick it off and got a napkin to help him wipe it off but of course, in 2-year-old fashion, he kept saying, Ow, Ow, Ow! Ben finally said, “Should I put some salt on them?”, just joking, of course. Ethan said, “Sure.” (His favorite answer.) So, Ben sprinkled a little salt from the salt shaker on the backs of his fingers and we waited to see his reaction. He stared at his hand and said, “Much better,” and returned to eating. We cracked up! Then he started licking the salt off as any kid would do, and asking for more. So funny!
The bathroom: The permits came through. We were waiting then on the scheduling for each sub-contractor to be finalized and then they would give us the date. However, Ben found out today that because of the age of our house, they have to run lead and asbestos testing to make sure the workers are safe during demolition. That will be done this week—another piece of the puzzle. Depending on what they find out from that, I’m sure it may change the timeline significantly.
Thanks for all your prayers! We never want to take your love and care for granted. May God bless you in ways we never will be able.