Week 145

This was a very difficult week for us.  On Tuesday, when Dawn posted last week's blog she wrote about how Jack was not feeling well.  Well as the week went on, Jack did not improve.  Even after several nebulizer treatments, Jack's breathing did not get any better, in fact it seem to get worse.  It got so bad that on Thursday evening Jack woke up several times in distress and he did not respond to three different nebulizer treatments.  After calling the pediatrician to let her hear how Jack was breathing and coughing, we took her advice and ended up taking him to the Emergency Room.  He was such a little trooper.  They tested for the flu, RSV, and Pertussis.  They took X rays, drew blood, and finally admitted him to the hospital around 4 AM on Friday morning.

Our sweet little Jack resting after a stressful evening in the ER.
Waiting to be transported to the pediatrics unit.

The final diagnosis was a double ear infection and Croup.  It took the pediatrician in the ER to dig out all the ear wax in Jack's ears to finally get a good look.  Once she did that she saw the problem right away.  We cannot tell you how many doctors and nurses during the week and that day looked in his ears and never bothered to get the ear wax out of the way to get a good look.  Once they gave him the medicine for the ear infection, a different medicine through a nebulizer treatment, and a steroid to help clear up the cough, his breathing improved.  He spent Friday night as well in the hospital to make sure everything was normal and was discharged on Saturday morning.  He is still not 100%.  His breathing is on the fast side, but his spirits are good.  He had a good night's sleep on Saturday, and Sunday was a good day.  Hopefully, this is the end of a long two weeks of Jack being ill and crazy week that we have had with everyone being sick!

At the hospital; starting to feel better!

What a difference 48 hours on the proper medications can make!

On the Ryan front, he had an okay week.  With all of the transitions since Thursday, he was a little off.  He was able to play video games with his cousin on Friday evening and really wanted to go over and play again on Saturday.  But we said no and he had a melt down to the point that he put his shoes on, coat on, and was going to "drive himself" to Uncle T's to play.  We were able to get him out of it by telling him that we were going to a birthday party across the street.  He was all set at the party until they decided to break out Wii bowling and then Ryan lost interest in playing with the other kids, and just focused on trying to get into the game.  We were only going to stay an hour and we had a tough time leaving.

On a positive note, Ryan received a 100% on his last religion test.  Given the fact that he gave Dawn and I such a difficult time studying for this test, it was great to see.  His teachers were really happy with his test and with how he handles himself in the class.  They told me that on test days Ryan sits by himself and keeps his eyes on his own paper.

Ryan really tries hard to please all of his teachers.  For example, they encouraged the kids to read more non-fiction books.  When we showed Ryan the book magazine and told him he can pick something out, he passed by the cool looking Ninjago books and picked a set of non-fiction books about Presidents Washington and Lincoln.  And on the announcements at school they talk to the kids about events such as no name calling week and the upcoming Penny Wars.  Ryan comes home and makes sure he does what he needs to in order to be involved.  If they ask the kids to wear blue to school, he reminds us that evening when we are taking out his clothes for the next day.  His new kick is this "Penny Wars" fundraiser they are doing.  He talks about it constantly and we give him coins for good behavior and he adds it to his baggy to bring to school to donate.  He even tried to take money out of his own wallet but I wouldn't allow it.  He really does get obsessed with these things, especially if it is a contest at school and his class has a chance to win something.  He will bring in coins to donate, like most of the other kids, but I would find it hard to believe that many of the other kids did chores to earn those coins.    While I'm glad he likes to get involved, I know that most of the time his efforts go unnoticed.  What comes easy to most kids takes a whole lot of effort from Ryan.

Hopefully with everyone feeling better, we can get back to our routine.  It will be an emotionally trying few days for all of us as Dawn's time at home on maternity leave comes to a close and she heads back to work at the end of the week.

PC and DC 

Week 47

This was a tough week for us with everyone being sick. Ryan was still sick most of the week. We kept both Ryan and Julia home on Monday and tried to send them in on Tuesday.  Half way through the day their daycare called to tell us that Julia was now sick and Dawn went to bring her home.  When I went to pick up Ryan later that afternoon he was standing on one of the outside play ground pieces and asked me "if he could go home now".  Normally we have to drag him off the playground but he looked so sick just standing there we kept him home the next two days.  It was a total team effort between Nonna and Grandma coming down and watching both of them the rest of the week. On Friday Ryan was well enough to go to school but Julia was still sick and went up to Nonna and Papa's house. Everyone is starting to get better but it was a long illness! 

This week we were supposed to drive up to Dr. Bock on Tuesday. However, with everyone still being sick this was not a possibility. So we set up a phone appointment.  Dr. Bock was pleased with Ryan's progress and was glad that he did well on the trip to Pittsburgh and Florida. He is going to write us a letter in support of Ryan on the GF/CF diet so we can add it to his IEP at his annual review this May. He also put Ryan on a new supplement called Phosphatidylcholine concentrate.  This is to help with developing and repairing neurons in the brain and to help with the break down of fatty acids.  He is still unsure as to why Ryan's eczema comes back so he is going to send us back for more blood work to look at fatty acid levels, vitamin D, iron, and minerals. 

The kids seem to be back to their old selves again.  Here they are dancing together...

We did not mention in last week's blog that we registered Ryan for Kindergarten! However, you would think that this would be an easy thing but of course it does come with it's transportation dilemma. The form for requesting transportation is due by April 1st. However, Ryan's annual review is not until the end of May. We will not know if Ryan is in morning, afternoon, or in the all day special education kindergarten (yes, our school district still has half day) until the middle of August. Our school district's response is to fill out the form letting them know where to pick him up and drop him off for all three scenario's.  However, how can we go to a day care facility and ask them for a spot if we do not know what we need? While I am sure that the transportation will work out it just causes us unnecessary stress and this always seems to be the one area that we get the biggest headaches with when dealing with Ryan and his programs.

Ryan came home with a clay dinosaur that he made at PARC.  He was quite proud of his creation!

PC

Day 27

While the diet seems to be working great his skin stills is so dry and scratchy. We had hoped by this time we would be seeing a change in his skin. Some people suggest removing food high in Phenols. We seem to be getting a good handle on the GF/CF food and he is doing such a great job with the new diet. Having a new set of food that we have to watch for is going to be another challenge.

Ryan is doing such a great job with the food he has even told other people that he can not have certain foods. Today in daycare they were having Goldfish for a snack. The teacher was in such a rush getting the snacks out for the other children she forgot and gave Ryan a plate of Goldfish. He went up to the teacher and told her that he can not have Goldfish and that he wanted his special snacks. Even at four years old, he is recognizing what types of food that he wants and can have. We often wonder if he recognizes the effect that the diet is having on himself and what he was before the diet.

We have also been noticing that his memory is greatly improving. He is hearing songs on the car radio and singing them. He never did this before. He is also telling us the songs that they are singing in school, which is also a first. We attribute this to the diet and also the supplements that Dr. Bock had prescribed for Ryan.

The only bad thing today was that I had to pick him up early from day care because of the croup. He was coughing badly and was withdrawing from others. He has been doing so well, we decided that we were not going to push it. His regular doctor prescribed a liquid steroid to help with the coughing and it seems to help. Hopefully tomorrow will be a better day for him.

PC