Welcome sunshine!
Just over a week ago I took Noah to Orem to be assessed for the school districts Early Childhood Intervention Program. At his 4 year check up, his pediatrician asked us to take him back to physical therapy to work on his gross motor skills (he used to be in physical therapy when he was a baby until he was 2 1/2 due to his condition called hypotonia; he was finally discharged once he met all the milestones all the other kids his age had already met). We've dragged our feet taking Noah back to therapy because the sessions would have to be paid "out of pocket" since he isn't eligible to be on our family health insurance plan (thankfully at least ONE good thing will come from Obama's new Health Care Bill; once it is signed into effect, our health insurance company will HAVE to cover Noah because they can't exempt him any longer due to his "preexisting condition". Yahoo! That's about the only good this new bill do for our country). A session of physical therapy can be pretty costly, especially if he needs to go once or twice a week! My mother (who is a teacher in California) told me I should contact our school district to see if they offered any kind of services that can help him free of charge, that's when I learned about the school districts Early Childhood Intervention Program. But before Noah was eligible for help through the program, he had to first be evaluated.
The first thing the occupational therapist said to me as she walked into the room at the evaluation was,
"Oh yeah, look at his pudgy little hands... he definitely has hypotonia".
I thought that was pretty remarkable that she could tell he had the condition based off the appearance of his chubby little hands. To most people, they would NEVER know that Noah has had a medical condition that has troubled him his whole life. Unsure of WHAT hypotonia is? Click here. We've had Noah involved in sports (swimming, soccer, baseball) since he was REALLY little hoping that the activity can help improve his tone and muscle strength.Noah scored high enough on the fine motor skills test that he didn't qualify for help, but the therapist still suggested that we work on a few things at home to help improve his skills, such as teaching him to button his shirts and unbutton them (he still can not do that on his own), write with a pencil (he can write with a pencil but not for very long, his hands get tired after just a minute or two) and play with play dough, A LOT! Oh joy! I hate play dough, two reasons being that A. it's made out of flour and I'm allergic to flour & B. it's messy and ends up on carpets and couches! Whatev though, I'll do what it takes to help him.
The purpose of the second portion of his assessment was to evaluate his gross motor skills. This evaluation took about an hour and it was SERIOUSLY funny watching Noah go at it. The ladies evaluating Noah asked him to do push ups and sits ups, neither of which he could do. He just laid on the floor. After which they asked him to hop on one foot then stand on one foot and stay balanced, both of which he couldn't do either! He looked like a drunk who just failed his sobriety test miserably. Just as I suspected, after the ladies finished evaluating Noah they added up their scores and wrote up a short report informing me that he was significantly delayed in his gross motor skills. BUT, because he passed his fine motor skills test, he still didn't qualify for admittance into the Early Childhood Intervention Program. BUMMER! They told us they thought it would be best if we put Noah back into physical therapy, but understanding that he doesn't have health insurance to cover the costs, they told us they thought that there's a good chance WE (meaning Spencer & I) could help him at home on our home using a few different exercises they showed me. Meanwhile, they also told me to keep putting him sports... not because they or I think that one day he'll grow to be an amazing athlete, but more because sports are a great way of keeping things fun for him and can work on conditioning and strengthening the same core body muscles he needs help with. They told us to keep him in swimming and suggested we also look into getting him into gymnastics, favorably tumbling, so I guess we better go buy him a leotard (just kidding) and horse back riding. Horse back riding is pretty expensive to get started in, but I haven't completely ruled it out yet. It's actually the BEST therapy a child with his disorder can receive.
Despite the fact that the school districts Early Childhood Intervention Program couldn't help Noah, I did get a lot of good, useful tips and Noah had FUN "essersizing" (as he says it). Oh yeah, they also tested his hearing before we left and he hears just fine. Now I know all those times I ask him to do something and he doesn't do it, it's not because he can't hear me, it's just because he CHOOSES not to do it! The little booger.
After this assessment, we visited the mall. I needed to stop by Nordstrom to pick up some new makeup at the Mac counter and I found a CUTE pair of Hurley shorts on sale for Bentley (I LOVE sales at Nordstrom! Once I found the boys a cute pair of Volcom jeans on sale for $7. Originally they were $60. Not a thing was wrong with them, they were just on sale!). As we were leaving the department store, I saw the hottest pair of sunglasses for Noah; I couldn't resist buying them because they were so darn cute AND it was super SUNNY outside! I had the windows in the car rolled down that afternoon it was warm enough outside. I think I was just having one of my "Gee, I wish I still lived by the beach" moments when I bought Bentley the shorts and Noah his shades, because later that day it began to snow! Ughhh. I hate when it's still Winter in Utah after the holidays. I'm ready for Summer (kind of... minus the 100 degree heat; 80 degrees would be perfect!).
When we got home, I made Noah do a short photo shoot in his new shades.
He's becoming such a big boy! It happened overnight I SWEAR!
I asked him to show me the "hang ten" sign
but instead he showed me the "I love you" sign AND the "hang ten" sign together!
I love this picture below.
He reminds me of my celebrity crush, Johnny Knoxville.
I love my little guy. He's not always an angel, he has his moments that make me want to sell him on EBAY but they don't happen too often. More often than not, he's a joy and a lot of fun to have in the home.
A couple of weeks back, in February, we had a night during which we almost lost him. He had gone to bed a little later than usual on this particular night, right around 9 o'clock. I noticed just before bedtime that his voice started sounding a little raspy, so I thought that maybe it was a sign of a cold coming on. I told him that he needed to get lots of sleep that night so that he wouldn't start to get even more sick. Spencer was gone that evening to a Jazz basketball game up in Salt Lake and didn't return home until 11 or so. I stayed up to see him get home, and just as we were going to bed I went and unlocked the boys bedroom door (almost a week earlier we bought a lock to put on the outside of the boys bedroom door; we started to use the lock because they wouldn't sleep otherwise... they refused to stay in their room at night and would get up during the middle of the night to ransack our fridge and pantry downstairs while we were sleeping. Neither Spencer nor I were getting any sleep for WEEKS on end, and our boys were all REALLY grumpy because they weren't getting enough sleep at night; we were at our wits end so we decided to lock them in when they wouldn't stay in bed at night. We don't keep the door locked all night; one of us unlocks it before we go to sleep at night just in case if there's an emergency or should Noah need to use the bathroom.) Anyhow, on that particular night, I unlocked his bedroom door just as we were going to bed. Spencer and I stayed up and talked for another 20 minutes or so, and then we turned off the light to go to sleep. Not even a minute after the light was turned out, I head a noise. Then as I was getting out of bed to flip on our light, I felt Noah beating on our bed! I flipped on the light immediately and we saw that Noah was having difficulty breathing! He wasn't choking, or coughing; he was just gasping for air! His air way was constricted! I panicked, I didn't know what to do in the moment! I was actually trying to make sense of the whole situation when what I should have been doing was calling 911 or rushing him to the hospital! It's a good thing that Spencer was by my side. He reacted appropriately and hurried to rush Noah to the hospital. I followed Spencer out of our room, who by this time was already carrying Noah downstairs and out to the car. I watched as he frantically buckled him into his car seat. I saw that Noah was having an increasingly difficult time breathing and it was right then, just as they were pulling out of the driveway that the thought occurred to me, we should have called an ambulance; he might not make it to the hospital. We only live a couple blocks from the nearest hospital and E.R. (thank goodness). I prayed those next 10-20 minutes that Spencer would get him to the hospital in time and that the doctors could do something to help Noah. The next hour sitting at home next to my phone, not knowing what was happening was difficult for me. I didn't know WHAT was happening to Noah; I didn't know whether he had stopped breathing all together or if the doctors managed to stabilize his breathing. Spencer finally called me and told me that every thing was okay. The doctors told him he was lucky to get Noah to the hospital at the time he did, otherwise Noah would have died that night. They had to give him 3 steroid shots to help him breath and had him on oxygen for the night. I thought that possibly Noah was having an allergic reaction to something like peanuts (he's allergic to gluten, but he didn't have anything with gluten in it that day; he did however eat a sundae from McDonald's earlier that evening and for the first time EVER, I put the chopped peanuts they pack with the sundae on his ice cream.) The way he was struggling for air looked like he was had anaphylaxis. The doctors didn't think that it was a peanut allergy though (they did end up testing him for a nut allergy and the results came back normal). They said they thought it was probably just a REALLY bad case of croup; not your normal croup that most kids get. It made sense. Noah has had croup chronically through out his entire life. Before he was 6 months old, he had it 9 times; each time he'd have to visit the E.R. or his doctor's office to be given a steroid shot and oxygen. It also doesn't help that he has hypotonia and another condition called Bronchomalacia- it's a problem with which both the muscles and the cartilage surrounding the bronchial tubes can collapse obstructing his airway.
Noah stayed in the E.R. for about 3 hours till the doctors had him stabilized enough to move him over to the pediatric unit in the hospital. They transferred him in a big portable hospital bed. Noah thought that was the COOLEST thing ever! The next day when I went to see him he told me they moved him in an "alligator bed"! What he really meant to say was that they moved him in a bed and they rode the elevator, NOT an alligator.
The doctors and nurses kept Noah at the hospital for 16 hours, most of which was for observation. Spencer stayed with him the entire time.
I picked up a balloon @ Maceys for Noah.
He LOVES balloons.
He was in good spirits.
He thought it was SUPER cool that he got to eat his breakfast in bed (I don't allow him to eat breakfast in bed back at home obviously). He was breathing fine and his oxygen count and heart rate were normal. I brought him "Go Fish" cards to play; we drew and colored pictures and we also played a game of Candy Land with him.
I spoke with the pediatrician at the hospital who was caring for Noah; the doctor still wasn't absolutely positive WHAT it was that caused Noah to nearly quit breathing the night before; he thought it was just a bad case of croup made worse by his hypotonia and Bronchomalacia but he wasn't certain, and the doctor wanted to keep Noah in the hospital again overnight! Spencer and I are concerned parents and we want the best for our son but the fact that Noah doesn't have health care coverage because he's been labeled "uninsurable for life" by our health care company LOOMED over our consciences... we KNEW that his visit and treatments at the E.R. were going to cost us a $$$fortune$$$, not to mention the cost from the time he was spending in the pediatric care unit. We hated to sound prude about the whole situation, but we just wanted him to be well enough so we could take him home with us and care for him at home. We discussed the matter with the doctor and he finally agreed to let us take Noah home, on the terms that should his breathing begin to worsen, we either call an ambulance or hurry him back over to the hospital. The nurses also gave Noah another steroid shot before he left, just in case, should anything happen.
It felt good to bring him home. His brothers, particularly Ian, were excited to see him. Aunt Tricia stopped by with Daniel and Bella to bring him a gift (Thomas the Train) and they also dropped off a gift that Noah's preschool teacher sent for him after hearing that he was in the hospital. It was a Giraffes Can't Dance book (our family's favorite children's book) and a stuffed giraffe! The kids in Noah's class even made him a card and signed it with all of their names. It was so cute.
I love him madly and I'm so happy he's mine/ours.
2 comments:
what a cutie. oh great, now I feel like I have to try to teach Jonathan how to button and do push ups. We have switched the boys doorknob around so the lock in on the outside - I totally understand... Isn't it scary when they get sick! I'm glad everything turned out and that he can be covered by insurance.
When the health care bill passed I actually breathed a sigh of relief for you because I know you've had the pre-existing condition problem. I'm glad that you two will benefit from at least that! And for the record, I turn my kids door knob around as soon as they move from their crib to a bed. That way they never even know they can leave the room. But of course, after they are asleep, we unlock it. I must admit, though, that sometimes I re-lock it in the morning so that I don't have some stinker sneaking out and causing mischief while I'm in the shower! :)
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