Stressful Decisions

Well it's been a while since I've updated you on how Matthew's doing and what challenges we've been facing.  We've had two of our yearly appointments that are required for Joubert patients.  The first, our neurologist, he was very impressed with Matthew's progress, his balance is pretty much stable and his walking is just a tad abnormal due to the gait issue and the AFOs.  However, he did diagnosis Matthew with a mild speech apraxia, Matthew has about 125 spoken words and can put two words together and can say a three to four word sentence, which the only sentence is "Mommy, I want........  This I do count as a HUGE blessing, as where only half of Joubert kids don't talk until the age of 4.  Our neurologist also noticed that Matthew has trouble tracking things, he can track it but not at the rate of speed that it should be, so therefore, reading will be an issue we face.  Mentally, Matthew is age appropriate along with the age appropriate behaviors, etc.  We did ask the doctor about Matthew's someone jerky and tense movements, he only does these when he gets excited, bored or sleepy.  We were thinking, ataxia but to our relief it's more so a BAD habit.  

Appointment #2, was to our geneticist at Baptist, which I dreaded most of all.  I prayed and prayed the night before that God will make this appointment and blessing, not only for us but for our doctor too.  (Reminder, our geneticist was not one bit optimistic with us last yr at this time.)  To no surprise when you pray for God's help and his intervention it most always works.  Not only was Dr. Jewett very, very impressed with Matthew she's very optimistic about his health.  She did suggest we do the scans yearly instead of every two years, which I agreed too.  Matthew of course had a stomach bug when we went and didn't feel good but he did let the doctor know that the appt. was over when he shook her hand got down off my lap, ran to the door, opened the door and told her, "bye".  Now that's my little Matthew.  God is so good!!!

We've also been working on potty training, Matthew has had no trouble peeing and pooping in the potty so I decided enough of pull ups he needs to learn to control his bladder.  So as of "Good Friday" we've been in big boy underwear at home. His school says he's not ready and it's to much for the teacher with 9 other kids.  (that's another issue for another time.) After the first couple of days he got the hang of it.  So far I have to change him about 3 times a day and that's just because he's too focused on playing.  He's so cute in his little under roos.  

  

Now to the stressful decisions,  Matthew last week had his school assessment since he's about to age out of the Early Intervention program.  He, I think done very well, but I'm afraid too well to qualify for everyday at school.  I've asked for everyday but I'm afraid I'm going to have to fight for it.  I know he'll get in for the speech.  Matthew also has two choices of schools he can attend, which is the biggy.  They're both good schools with GREAT teachers, one I can easily get after school care and the other one will be closer to me at work.  I've been sitting in at both schools in the classes that Matthew will be in and I'm going one more time just to be sure I get a good feel.  Pray that I make the right choice and that Matthew can go everyday to school.
Our other BIG Financial decision is we're getting ready to add on to our house and trying to juggle when we could start the build with vacation and VBS and Matthew's birthday coming up, and schooling and trying to have another baby is sometimes all too much for my brain to handle.  (yes, you heard right, another BABY)

Decisions though, rather big or small take some time to make and some true guidance from God.  This has been a learned lesson for me these past couple of weeks and months.  I'm always the one making the decision right then and it bugs me like crazy when someone can't make up there mind.  We'll my punishment has now been taken, never again will I complain about someone taking too long to make a decision because it can truly, truly affect you, mind, body and soul.