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Garrett's Hypotonia Website

October 2004

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My Hypotonia Story
My Journal
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Ready for Bed!!

Today was a weird day.  I'm not sure why, but I was feeling depressed about Garrett's problems.  I can't think of anything that sparked it really.  I did take him to get the blood work done for the alpha fetoprotein test, but I was feeling blah before then.  It could be that I knew I was taking him in for that and just woke up in this mood.
So, he's had a cold or something and now has a very bad diaper rash that is actually a yeast infection on his little butt.  Poor thing.  I have to rinse the wipes in water because they sting him if I don't.  We ran out of paper towels, so this is my only option right now.  Then I have to somehow rub anti-fungal cream on him as he squirms all over.  It's so much fun.  He would only eat Nutri-grain bars today and drink water.  He didn't want anything to do with his milk, and anything else that was on his tray was immediately thrown to the floor.  He also decided that bibs are for babies and took his off every time I put it on.  To top all of this off, I've been depressed about his problems.  It's just been one of those days!
After I got him to bed, I decided to go through the mail because I had some magazines that came in the mail today.  Yippeeeee!!  I opened up Baby Talk to the last page to read "the bt list".  I love reading that page.  It always has something funny!  This one was "12 things about pregnancy you'll remember forever".  I became a weeping mess sitting there at my kitchen table.  My pregnancy was so normal, I tried to do everything right, and I had no idea anything was even wrong with Garrett until he was 7 or 8 months old.  Number 12 was "How thrilled - and terrified - you felt when the labor pains finally kicked in and you realized your child was almost here...and your life was about to be transformed forever."  Transformed forever?  My God, I had no idea just how much my life would change.  It's all just a big slap in the face for me right now.
I love Garrett so much, but some days are just hard.  On days like today, I wonder if he will ever go to a normal school, have friends, learn to drive a car, and all the other things we take for granted.  Okay, enough of the pity party.
I noticed that I hadn't written anything here about Garrett's visit to the Geneticist.  We went about a month ago.  The doctor looked him over from head to toe, I was asked a zillion questions, and Garrett was sent off for a series of blood work, urine test, and an ultrasound. 
The doctor didn't think Garrett has BWS, but given Garrett has several "soft signs" of the syndrome, he felt we should get it checked out just in case.  BWS kids have a higher risk of developing cancer, so better safe than sorry.  The ultrasound showed nothing abnormal.  (They were checking out the size of his organs as well as looking for cancer tumors.)  They looked at the tips of his chromosomes through some bloodwork, and that came back normal.  His urine test was fine.  His blood work before his surgery (the T&A back in June) was off, so the doctor wanted to repeat all of that.  Again, it all came back normal.  His glucose level was guessed it...normal again.  Only one thing was questionable, and that was his alpha feto protein level.  Typically, this is elevated 10 to 30 times above normal for people with BWS.  Garrett's level was only 2 times above normal.  Add that to his list of "soft signs" for BWS.  I was a little freaked out about it at first because it can also be a sign of liver cancer.  Yikes!!!  I am taking him on Monday to have blood drawn to check the level again.  If it is the same, we'll continue to monitor it to be sure it stays there.  If it has gone up, that could mean some form of cancer is in his body.
Here we go again...things aren't exactly normal, but they aren't so abnormal as to think something is wrong.  This is the story of this poor little guy's life.  It's obvious that there is something wrong with him, but his symptoms don't fit nicely into any syndrome or disease.  He's going back to the genticist in December to determine what we do next.  I was relieved that the geneticist seemed pleased about Garrett's development so far.
If anyone needs a geneticist in the Cincinnati area, his doctor is Dr. Tinkle at Cincinnati Children's Hospital.  He had an AWESOME bedside manner, and not once did he make me feel like an idiot for the questions I was asking or things I was telling him about Garrett.  It felt like a visit with the pediatrician rather than a specialist.  (By the way, Garrett's pediatiricians are also AWESOME...Dr. Spicker and Dr. Deis at Pediatric Associates in them, love them, love them!)
Anyway, Dr. Tinkle isn't sure about what Garrett may have, but the he does suspect some type of genetic disorder.  I don't know if he'll ever figure it out, but if he does, I will be forever grateful.  I don't think I could find a way to thank him enough.
Garrett is FINALLY starting to get more teeth!  He is working on tooth #4 and #5 now, the top front ones.  The tooth next to the right front one came in a month ago.  He has such a strange teething pattern!  He's going to look so strange with front teeth!  He's gone 16 months without them, so it will be fun to see if he looks more like a big boy once they come in.
The little man learned a new skill this week.  He can now suck his thumb and pick his nose at the same time!  I've been trying to get a picture of him doing this, but he always stops when I get the camera out.  He loves to try to play with the camera.  I may never get a picture of him doing this, but I hope I do.  It's going in the baby book if I get it.  Oh, yes, it will be fun to embarrass him with it when he's a teenager.
I've been really bad about updating this site in the past month.  Garrett has now taken off with crawling!!  We went on a cruise at the end of September, and Garrett stayed with my parents for the week.  We left him just barely crawling and came back to a crawling machine!!  He even got into the dog food while at Grandma and Grandpa's!  He also is working on his 4 top teeth.  Only 1 has broken through the gums, but the other 3 are not far behind.  It doesn't seem to be bothering him much right now.  I hope the crawling is enough of a distraction so that he won't feel the teeth coming through.
In addition to the crawling, Garrett is getting himself into and out of a sitting position like a pro.  It's amazing how he went from not being about to crawl or get in and out of sitting to doing both in such a short time.  He likes to crawl a short distance, sit down, clap for himself, and then crawl some more.  I think the newness of crawling is wearing off because he is now moving on to being nosey about wires, open doors, paper on the floor, etc.  If it's on the floor or within his reach while crawling, it's fair game.  Yikes!  I need to start baby proofing the house!!
Most people don't look forward to this stage as I have.  But then again, most people aren't waiting on a 15-month-old to get mobile.  I'm so excited that I need to baby proof my house finally.  It's so amazing to see him crawling.  I do remember one day very clearly when I wondered if Garrett would ever crawl.  Now that the crawling days are here, I feel much better about his future.  I'm still concerned about his cognitive abilities, but I'm hoping he's just behind there because of not being mobile and having problems with his hearing.
Happy 16 months to Garrett!!  He is exactly 16 months old today!

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