WOW! So much has gone on over the past few months. I’m almost at a loss as to where to begin.
This blog entry may be a little different from some of the others, but I just really need to write tonight to help get my thoughts and feelings out. I apologize in advance if it seems kind of like it’s jumping all over, I’ll try to look back and make it look like some sort of sense afterwards lol
Well, Patrick is growing up!! He’s going to be a teenager next month!! 13yrs old!!! Where does the time go?? So much has changed with him over the past year, it’s been amazing!! I’m so proud of him! No matter what happens, what goes on or how I feel…I can look at him and my smile returns instantly!
He has been dealing with all the changes so well. Years ago, he would not have tolerated everything that’s been happening so well. His personality is blossoming, his communication is coming along so well, my baby’s growing up!
As some of you know, who go through similar situations, appointments can go in spurts at times. It will seem like for a few months, that’s all you seem to do is run here and there, and the rest of the year, it’s intermittent. It’s that time of year for us, and with all the advances he’s made, more have been added at this time as well.
Regular check ups with the Nephrologist, including a kidney ultrasound, blood work and a 24hr blood pressure monitor.
Dietition updates, revisions and suggestions for his growth, size and weight.
Regular check up with the Neurosurgeon including a CT scan and Shunt Series.
Dental check up which now requires a specialist appt and a ‘day surgery’ to be booked soon.
In visits with the school OT/PT, a referral to the Orthopedic surgeon had been done and now orthotics are being made.
As well, with him growing so much this past year, he has almost outgrown his seat in his powerchair, so a seating appointment was done as well, and a follow-up to that to be coming.
I also request 2x a year, a “team” meeting at the school. A meeting where all the therapists, teachers, EA’s, community case managers etc, can be together in the same room and get updated on Patrick’s progress at once. Either the principal and/or vice principal and sometimes someone from the school board attends as well. That meeting will also be in 2 weeks.
Let’s see where to begin…updates…hmmm…
24hr blood pressure to be rescheduled, waiting for a date still. Ultrasound now shows, 2 cysts on one kidney, 1 on the other. Hopefully the rate of growth is an indication of its progression and things will continue to be ‘slow’ with that regard. As many of you may not know, with his syndrome, Meckel Syndrome, polycystic kidneys are typically known and usually the primary reason for loss of life, among other things. Bloodwork was good, Iron still a little low, so he has been taking iron for a few months now.
Having not had a diet change in years and with his growth and the fact near the end of summer last year, he always complained of being tired, I had a dietition come in to ‘re-asses’ his needs. After some blood work, a visit with the Ped, she came out and we discussed some concerns regarding his dietary needs. With not eating ‘regular’ food like you and I, ‘baby food’ was not not meeting his growing needs. He was lacking in a few vitamins, fibre, protein and iron.
Now taking Iron, a multi-vitamin and adding benefibre and sunflower oil to his meals, his blood work and his health have improved even more. He is now just over 4 ft. tall and is weighing in at around 69lbs. We will continue to monitor his needs and his weight, as he’s not as active as ‘most’ kids and we don’t want him to get too large and heavy for his size. As well, for lifting etc…thank god for ceiling tracks, which I REALLY need to start using more lol
It’s been about 4yrs or so since his last hospitalization for a length of time. Woohoo! Appointments coming up for the CT scan and Shunt series. The shunt series is just an xray to take a look in his abdomen to see that there is enough length still on the end of the shunts to allow for his growth. This one will be interesting to see because of how much he’s grown this past year. He’s never needed an ‘extension’ put on previously, as there were issues with the shunts that had come up and they were just replaced. Those appts are next week, and the first week of June is with the neurosurgeon. Everything’s been good the past few years with these programmable shunts. The odd concern with intermittent blockages here and there, but nothing that hasn’t seemed to work itself out so far.
The dentist was very pleased to see how he was doing and how is teeth were, which was great and a great improvement from when he saw him previously, 4yrs ago. When he was 5yrs old he had a gingivectomy done. He had a lot of ‘gum’ in his mouth, it was covering his teeth etc. so they removed much of it. Between then and now, 8 teeth were taken out by the Dr. and others have come out on their own. It’s been noticed in the past few months, what looks like a double set of ‘eye’ teeth. So a consult was done today with a specialist to look at taking one of the sets out. Apparently one of them is still baby teeth. So we await that call for the ‘day surgery’ for that.
While using his standing frame at school and other various activities and therapy, it was noticed his feet were not ‘sitting’ correctly. He does not weight bear hardly at all, and what little he does, he does it on his toes. The only way he’ll stand flat foot is with sneakers on. A referral to the orthopedic surgeon was made. One of the first things he mentioned was how big he was for the seat on his powerchair lol I told him, we already had an appt to get that looked at and that it was noticed the previous week at another appt. He suggested for his feet, we try some orthotics to help get his feet more ‘pliable’ to go into the proper position. To stretch out those muscles behind his knees down to his feet.
He did great when we went for the ‘casting’!! He’s come so far, as I said, years ago, he would not have tolerated this stuff, it would have made for some very difficult appointments. He even picked out his own pattern for the orthotics. First it was fish, then it was planets…then he saw a camouflage pair…well he got excited about those!! So that’s what he chose They will be ready next week as well! lol
Some temporary adjustments were made to his seat, until we get a few more things sorted. He has a little more growth left in the seat he has now, it’s been ‘lengthened’ to it’s max now. The seat was also tilted back about 5 degrees or so, to help get his sitting straighter. He ‘rolls’ his pelvis forward when he sits, and it is hoped that with the adjustments that will be made and some verbal prompting, he will pay more attention and sit up straighter in his chair. It will of course help his posture, his health, and his breathing to name a few things.
He will need new foot plates for his chair to allow for the growth as well, so those are being looked at. As well, once he gets his orthotics, a follow-up appointment will be necessary to make adjustments for those as well, so that his feet and legs are comfortable and not having any ‘pressure’ points while in his chair. The orthotics will be worn at school during the day. When school is done, we’ll work out a ‘schedule’ for wearing them to keep that going.
We are also looking at a possible new mounting system for his chair and his communication device. We have had one appointment already to try out one, not really what we were hoping for. Another will be at the centre end of May, and we’ll try that one out as well. Only thing with this one at the end of May, it’s called the Mount n Mover, and if we decide it’s what we want/need and go for it, it will tie up our ADP funding for 3yrs. So we want to make sure we get what’s best for his needs.
Well, that was long….and there is still more lol I’m going to sign off for tonight, and I’ll update again later this week.
If you have any comments and/or questions, please feel free to ask, I’m always happy to hear from you and answer whatever I can, the best I can.
Good Night, dream sweet!