Wednesday, October 29, 2008
Welcome to Holland
By: Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Yesterday we received a report from Josh's Neurologist in the mail. It was a copy of the report that was sent to Josh's Pediatrician. It didn't have any lab results, just a history, diagnosis and recommendations about Josh. It was basically what was said at his appt a couple weeks ago, but with more medical jargon. Although after reading it (and having help translating it LOL, thanks Mom and Luke!) it had a slightly different tone than we got from the appt. Josh was diagnosed with global developmental delays, which means full body... like every area. He was noted to have a 'unsteady, immature gait for age. He was noted to have delays in speech, language and mild motor impairments, particularly with respect to an immature gait and slightly immature fine motor and gross motor skills.' So that is pretty much what we know and not anything surprising.
The next part of the report is what I am struggling with. He was diagnosed with Microcephaly, which is a small head size basically. But what we didn't know was what that truly means. I think the Neurologist didn't come right out and tell us the nitty gritty because it's not good news. Microcephaly means abnormal smallness of the head in relation to the size of the rest of the body: a congenital condition in which the brain is not fully developed. A congenital condition is something that a person is born with and could be genetic, or could have been caused by some other environmental factor. Which is why he needs to see a genetisist. He also was diagnosed with Brachycephaly which means a short head from front to back. So it's kinda like a double edged sword. The one thing the Neurologist did say was that he will have problems with development. It's not a matter of if, but when. He may not progress in some of his cognitive areas, or he may begin to and then stop at a later time. So we are in the unknown here.
I look at how sweet Josh is and it makes me so sad to think he may not be like this in the future. We will do everything we can to help him, but there is only so much modern medicine can do. I don't know why Scott and I were chosen to have two special needs children, but we were and we will make the best of it. I am going to post a poem that my friend Marian sent me, but was also read at Trevor's graduation from the Northern Utah Autism Program. It pretty much sums up how I feel and hit it right on the nose.
Friday, October 24, 2008
Of course I had to take some pictures to document our fun day.
I told Jordan and Jarron to smile, and they decided to put their arms around each other. CUTE!
Tuesday, October 21, 2008
THe GI doctor went well. They are doing a round of allergy tests to see if there is anything else he is allergic to. The first round is just blood tests, but if they come back negative, we are going to have to do the skin prick ones. If that comes back negative, they do a scope. So we hope it doesn't have to get that far. But we'll see. She said some kids only show the signs in their esophogus, so that is why if the blood tests don't show anything, we keep going. We are going to stay on the same meds he is on now for his reflux and ect., plus add one more. Not too bad of news. He is underweight, so we are going to be putting him on a new formula that is high calorie and better for him. We also saw a Pediatric Dietician today as well and she was wonderful and so helpful. We are going to actually be allowing him more bottles so he can get the calories he needs to get the weight up. She said right now he is not really getting his nutrition from his pureed food anyway, so letting him take as much formula as he wants is the better way to go. The only problem is that we can only get the formula online since it is not a common one... so you know that means more $$$!!! Sigh.. what else is new with Josh, huh? We are also going to be going back to see the GI doctor in December and he is going to be going to the Feeding Clinic at Primary's as soon as they get him in. I will just have to call the Dietician with bi-monthly weight updates and unless he starts to lose again we can see how he does. So it was not so bad this time around! The way they want me to feed him to get his weight up will take more time on my part, but whatever it takes to get it up, right?
He also had his lab work done which is NEVER a joy. The first arm didn't go so well with a blown vein, so he had to get poked on both sides. Needless to say he was quite upset and traumatized by the time we got to his EEG. So he was fussy and whining while they put all the probes on, but as soon as they were done and his head was wrapped up, I crawled into the hospital bed with him and fed him a bottle and he was out like a light. He did his 30 minutes just fine and we had to really work at it to get him awake for the end. But all in all he did amazing as usual! We should have all the results by next week, and we'll go from there. So let's hope that we can get all the info they need with the least amount of traumatizing events!
Friday, October 17, 2008
Here is Trevor playing with my mom's old cell phone. He got a kick out of taking pictures with it upside down.
Here is Jordan in his new shirt. It fits him very well, in case you are wondering!
Josh and Parker swinging. They both love to swing and it's great my mom has two baby swings. No fighting and they like to swing next to each other.
When one get's in trouble the other one follows! Parker loves to turn the TV on, and Josh was so excited to see someone turn it on. They both sat and hit the screen and looked at each other in triumph.
Wednesday, October 15, 2008
Jordan is listening to a pumpkin story about a very bumpy pumpkin.
The magic pumpkin had candy inside. They were so excited!
This is his preschool class and teacher, Miss Melodee.
Monday, October 13, 2008
First of all, Josh's MRI looked OK. He did have a higher volume of spinal fluid, but that isn't too worrisome. Also he did have a couple parts of his brain that aren't developed as much as normal, but that is due to his prematurity, and he is developmentally delayed...so that basically proves that he is. Not that we didn't know! So anyway, nothing too bad or horrible there. The neurologist did say he was sorry this isn't a cut and dry problem on the reason why he is having so many problems. We do need to do some further testing at this point. He is going to have an EEG next week to see if he is having some seizures and if there is anything there they can find. He also has to have some blood work done to test for some metobalic disorders. The Dr also wants us to go to a Genetisist to have a work-up done. He said sometimes that will give the reason why he is so behind in some areas. He did his exam, then told us he would be back with the test orders and left the room. I turned to Scott at that point and told him I was so glad that the MRI was good, so I could finally lay to rest my fears of something being wrong with his head. (We had that appt this past June for his head shape if you remember, and the Dr basically blew us off.) I was feeling pretty good about this appt and that we can know there isn't any major problems going on. Then the Dr walks back in. He told us while he was out writing orders he realized he forgot to put his head measurement on the chart to see where he is at. Then it all came down on us. He said now he was pretty concerned about Josh and the fact that his head size has now fallen off the chart. It was below the bottom line. I then told him that at that appt in June the Dr looked at his head size on the chart and told us it was in the 30% and that if it went below that, we had a problem. So low and behold... we are now off the chart. He told us that is very concerning for his future. The here and now is OK, but longterm it isn't looking so good. He told us he will probably end up with some learning disabilities and cognitive delays later on. His brain is growing at the normal rate and his skull is not keeping up. So eventually that is going to cause problems. So that was not what we thought we were going to be told today. He told us that it is very important now that we go to a genetisist to be tested for some disorders that can cause things like this. Not exactly what we were hoping to hear. So we will go down next week to Primary's for the day and do all his tests and see where we go with the GI doctor. When he gets the results from the tests we will see if we have to go back to him right away or not. We will probably have to have some yearly tests done on his brain to see where we are going. So for the first time it has been a little overwhelming for me, and couldn't decide if I even wanted to post about it right now. It's so hard when there is nothing you can do to make your little one's life better or easier. But we will take it one day at a time and hope for the best. Thank you for thinking of us and we will keep you updated.
Wednesday, October 8, 2008
Thursday, October 2, 2008
I just got off the phone making appt and arranging for babysitting. I am so glad that this is not going to be a long wait (like the GI doctors). Josh has an MRI scheduled for this coming tuesday, and then the next monday (the 13th) he has his appt at Primary's with the neurologist. So stay tuned to find out what is going on!
First of all we had our annual IEP (for those of you who don't know... an IEP is an Individual Education Plan, it's for special needs kids), meeting for Trevor yesterday. This is where we look at our goals from last year to see if he has met them and to set new goals depending on how he is doing. All in all, it was a pretty normal IEP meeting. But we did end up setting more goals than ever, and he now has an Occupational Therapist working with him on his Fine motor skills so he can get better at writing and drawing. He has never had to have a goal in the OT area, so that was a surprise to us. As he is getting older, more of his autism disabilities are coming out. He has a hard time understanding what is going on, and he get's off task constantly. So we may have to add a Behavioral Plan for him if it keeps up. But all in all, he is doing OK, but this is by far the hardest year for him yet. I hope he mellows out in the next month or so as he get's used to all the changes.
Now Josh had his 15 month checkup today... (yes I realize he is actually 16 months now). He saw a new Pediatrician today since I had to reschedule two weeks ago when he had a fever. Our Ped. office just got bought out and the new company added a new doctor. So we saw her today. He weighed in at 20lb 12oz which is what he weighed this week when his OT was here. That puts him in the 0% for weight. Right under the very bottom line. Sigh... about where we thought. His heighth though, was a surprise. At his 12m appt he was 31 inches tall and today he was 31 inches tall. So he has not grown in 4 months. So that was not a great sign to see. At his 12m appt he was in the 75th percentile... Today he is now in the 20th. So not a good sign. He is basically the same size now as 4 months ago. So it raises some red flags. This Ped. read what our regular one said about getting into a Pediatric Neurologist asap. So she is going to set up an MRI and anything else she can ahead of time and get us an appt now for that Dr. so when we go to the appt, the tests are already done. So we'll see when that will happen.
Now for some positive news... Josh is doing better at walking! He takes several steps at times before losing his balance and is very interested in being up. So other than his constant off-balancing thing he has going on, he would be walking well now. But we are so happy for any improvements we get at all with him!
So that is our latest family updates.... life is sure crazy some days!