Archive for March, 2011

Charts

This was a long week. Gabe was sick, then Nate who never gets sick was sick, and then Max. Just a virus going around nothing major but made for a long week. On Friday Gabe had his 5 year check up. It turns out he has dropped off of the bottom of the charts for weight and his height is hovering around the 5th%. My pediatrician is concerned about his weight. She feels the growth hormone will not necessarily help with his weight. The thing is that he eats. He eats well and eats healthy foods. I just don’t get it. I know I need to be more diligent about adding healthy fats to his foods. Today I made him a smoothy with almond milk and added olive oil to it. I’m just frustrated because we ruled out celiac and malabsorption. So is it just chronic kidney disease? Where do we go from here? Isn’t having ARPKD enough without having to worry about his weight too. I feel like ARPKD is enough but it brings with it a whole big list of other issues. Mainly there is the CHF we have to worry about. And with that there comes the platelet count, the enlarged spleen, varices, cholangitis…… Then separate from ARPKD/CHF but mostly because of it we have the high blood pressure, anemia, growth issues, the bladder issues (although not necessarily related but I think so), large painful kidneys, asthma (also possibly related and possibly not), lots of urine, and on and on.  Plus just the common childhood things that also are not necessarily related but in my opinion are worse because of the ARPKD.  Just a long week and lots of emotions for me. I think with Gabe’s birthday and the memories from his birth and my baby growing up and his appointment Friday and the boys being sick I am just emotional and tired and frustrated. But as usual also grateful for my beautiful boys and what we do have.

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March 19, 2011 at 8:42 pm 3 comments

Monday Memories

Dear Gabe,

Happy Birthday! Five years ago today I went to the doctor for a somewhat routine sonogram and left there to go straight to the hospital to be monitored overnight. That was the longest night of my life. I was told I had no amniotic fluid and one technician thought your kidneys looked slightly enlarged. The next morning my doctor decided to perform a C-Section due to the fact that I had no amniotic fluid. I am grateful for that. You were born at 12:59 PM on 3/15/06 and we named you Gabriel Shai Karl. You were immediately whisked away to the NICU. You did make noises when you were born but your lungs were much more underdeveloped than anyone thought they would be. You had a double pneumothorax (air pockets) in your lungs and had chest tubes put in on both sides. You were then put on a ventilator and given surfactant. Then when you were about 11 hours old you were transferred by ambulance to a better NICU. The next morning you had 2 blood transfusions. It was a rocky first 24 hours for you, but you pulled through. You were on the ventilator for about one week, CPAP for one more week, transferred back to the original NICU after 2 weeks, and home at 3 weeks of age. And at 4 weeks you were diagnosed with ARPKD. Sometimes it seems like just yesterday because my memories of those first 15 hours waiting for you to be born and the first 24 hours of extreme dread while you were in the NICU are still so present in my brain. But then sometimes it does seem like forever ago when I think of all we have been through over the last five years.

My little baby will be five tomorrow. Gabe you are the sweetest and most cuddly boy. You wake up with a smile and come and snuggle with me. You love giving hugs and kisses and love hanging out and playing with me. You love animals, especially dogs, and love your trains and video games. You have a ton of friends and are a good “player”. You look up to your older brothers and love being with them. You love spending time with your grandparents and family. This disease definitely doesn’t define you. For the most part you take it all in stride. You don’t love giving blood but you do it. You are constantly wet but it’s no big deal to you. You take 6 pills a day that you swallow like an adult! You let me take your blood pressure and often go to the doctor for one thing or another. You often have really bad bloody noses but you just deal with them. You have adult sized kidneys but only complain a little bit about tummy pain.  I am so proud of you. I am so lucky you are my little boy. I am sad that my baby is so big but enjoy every new experience with you. Sometimes you say things that are so “old” for you. You asked me about when you used to be an old man before you were a baby and died. I love you so very much and want to wish you the happiest of birthdays!

March 14, 2011 at 2:06 pm 1 comment

Bureaucracy

We had Gabe’s second IEP meeting and he still didn’t qualify. What kills me is that he cannot hold a crayon properly, still uses both hands, is extremely low tone, and tires easily. All of the therapists agree on this. He also had a psychological done last May at the NIH and then another one this December through my district and his scores went down. BUT…. his cognitive scores are average so the district says that even though he has these issues they are not affecting him cognitively or socially since the educational evaluation said his social skills are fine. What pisses me off is this is what I do for a living. I do these educational evaluations. You are with a child you have never met before for an hour maybe a little over an hour tops and you have to test their cognitive, language, social and emotional, adaptive, and motor skills. All of those in one hour. I think for me if I know a child is borderline then I am going to push for that child and make my report sound much worse than it is. I truly feel a child should not be hurt by the system because some scores are higher which ultimately skews the scores in the districts favor. I feel that no one was advocating for me or Gabe and the district chair was not the nicest person in the world. I kept saying how Gabe is always tired because of the ARPKD and how since he is so low tone he leans on me and the table. Meanwhile this chair has never even met Gabe and is just going on these reports and he kept saying well maybe he would benefit from the service but he does not have a big enough delay in his overall scores to qualify. One of the evaluators actually had the nerve to tell me I could get him services privately or through my insurance. That really pissed me off. Ummm…..hello…..do you know how much private OT services are? They could be 125-150 dollars for a 45 minute session. And I’m already having trouble paying all of my medical bills and I have insurance. Pretty decent insurance but with the economy my pretty decent insurance now has a huge deductible, large copays, and coinsurance, which means that after we pay our large deductibles and copays our insurance will only pay 90%. And that actually seems like a lot but Max and Gabe both had pulmonary function tests done recently. Any idea how much those cost? Close to $3000. So that was 250 dollars out of my pocket for both of those tests. So to say the least we are not going to be able to go the private route or the insurance route.

I feel the system has failed Gabe and I worry more than ever about him going to Kindergarten in September. Not only does he have this fine motor delay but he is often so tired throughout the day. Not to mention him wetting his pants. In a class of at least 20 I just hope he doesn’t get lost in the shuffle. Or worse I hope the teacher doesn’t get so frustrated with changing his pants all day that the rest of his issues get lost. I know I will advocate for him and I already have an appointment set up with the nurse to talk about all of this and am going to meet with the principal in May. But you know me…..worry, worry, worry. It should be my middle name.

March 6, 2011 at 9:22 am 1 comment


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