More Allergies!!

It seems to be that the only time I write on here is when the boys have some new medical advancement! HAHA! Needless to say, we do!

I took Andrew to see Dr. Murphy on July 27, for a little allergy intervention. I knew he had been having allergy issues, I was just not sure as to what he was allergic to. We had it down to dogs for sure, but knew there had to be other things.

They did the scratch testing and after waiting the 10 min for results, Drew had reactions to 20 out of the 28 possibilities!!! In comparison, Matthew had 3 or 4 positives, with maybe a couple questionables. Andrew did not leave anything up for question!

Fortunately for us, no foods, so that means no altering the diet. Unfortunately for us, it's the rest of the world that he is allergic to! I need to add to my fortunately list, that house dust is not a positive either!! YAY FOR ME! Since those of you who know me, know I don't like to dust! :)

His list covers, but is not limited to, trees, grass, cats, ragweed, mold and other things that just naturally occur in the air. There are others, I just can't remember them off the top of my head.

He was started on D'Allergy medicine twice a day and a cream to his skin when his eczema gets really bad.

He also has to carry around an epi-pen since there are so many allergies. I'm not sure how this will work with school. I'm sure it has to be kept in the office, but after thinking about this, the office is a ways away from his classroom should they need it right away! This is something that I will be looking into in the near future!

He also had lung function tests which showed that he does not have asthma, but Dr. Murphy said we can't rule out some serious sinus problems in the future. He can thank his dad for that one!

So this is where we are at. We check back in with Dr. Murphy in 2 weeks and then see him again in September.

Matthew is now looking more and more like my healthy one all the time! :)

Exhaustion

Matthew has been working so hard the last couple days to learn how to ride a big boy bike!!

So when we came into the house tonight after everyone had left from Drew's birthday party...everything has been in tears. He lays down wrong and he cries...Drew puts up hi farm and he cries... He is so tired...

Needless to say, we were in the bathtub by 6:30 p.m.!! :)

My Little Man

It's amazing...we just celebrated Andrew's 6th birthday! His birthday was on Thursday, but Sunday's work best for partys.

I am loving watching him grow. He's writing and trying to use computers. He loves riding his new bike and has this huge interest in playing basketball. He got a basketball hoop for his birthday and spent the afternoon running Uncle Luke in circles, but he had fun!

Now he's busy laying on the floor putting together his farm that Bob and Mariclaire got him! His patience is getting longer and he is so kind and gentle with Matthew! He is also into fishing and loves it!

I am so proud of the man he is becoming.

Recap!

I just realized that I didn't post much since last week. I didn't finish with the whole story!

After seeing Dr. Reinhart on Wednesday of last week, we went and met Kate Collins, a physical therapist at Children's. I had spoken with one of our physical therapists here in O'Neill and she suggested that we be "eval'd" by a PT at Children's since ASAH doesn't do a lot of pediatrics.

Kate was really good with Matthew and it was even better that she had done some of her clinical rotation at ASAH so she knew how it worked. Matt was kind of shy at first, but she got him playing and worked with us, showing us how to work with him. She was then going to report off to the PTs in O'Neill so they could do the therapy here! It wasn't anything major! Just basically a playdate!

Friday the MRI was done and when we got there, Matthew was a champion! He got dressed like they asked, he let them take his vitals like he asked, the only thing he did was kept repeating...no shots! I just agreed! Technically he wasn't going to get a shot...he was getting an IV!!

We were all set and then were notified that there was an emergency and that we were behind by about an hour, which was no problem. The anesthesiologist, Dr. Druvall, ( I think) who is amazing and spoke with me and shared concerns with me. I stated I was concerned with the knees, but it had only been ordered a pelvic. She was going to talk to Dr. Kronberg and see what he said.

Twenty minutes later, I am on the phone with Dr. Kronberg. He shares that he thinks the diagnosis from Dr. Reinhart is basically bogus and then asked what labs he ran. When I said none, he states...I am ordering a uric acid, LDH and CBC right now! They waited til Matt was asleep before they drew the blood.

This put another worry in my head. I was so happy with the way the two days had gone prior, that I just wanted to cry! I just kept thinking...Why couldn't it be that simple!

They came and took Matt, did the MRI, and in the mean time I found out that all of Matthew's labs were normal! YAY! This meant to Juvenile Rheumatoid Arthritis! I was happy!

When I talked to Dr. Kronberg about the lab, Matthew had been back for awhile and we were getting ready to go home. He stated that he was happy with Matt's labs and he was even happy with his CBC that showed that Matt's allergies had been in check! YAY! I was doing something right! :)

At this point he hadn't heard anything from the MRI and stated that they would have called him by that point had something been off! I was okay with that!

One of the nurses had come in and asked Matt if he wanted some juice and crackers. He said, no...SOUP! The nurse brought him crackers and he asked...where's my soup! So the amazing nurse went and got him a bowl of chicken noodle soup! He ate it down like a champ! Then we got to go home!

Here we are...4 days post MRI and no news. I figure no news is good news, but Dr. Kronberg will be getting a call from me in the a.m.!

We've only had one night of leg pains...which Dr. Reinhart said will happen with this syndrome...so I am happy with that...and it wasn't all out crying...just kind of moans.

OH!!! Yeah, what Matthew has is a syndrome! It's called Benign Joint Hypermobility Syndrome or BJHS! Like I previously said, he is just a freak and can move his joints moreso than the most of us. It is genetic and Auntie MC had researched it more than I have! The PT will help build up the muscles around the joints to help alleviate the extra movement and therefore help alleviate the pain!

Let's hope! It's been a long year...a long 3 1/2 years to be exact! I am just happy he's healthy!

Hand Socks

I always joke around with Matthew and tell him he's weird or he's a nerd! He usually replies with...No you a nerd!

But he has hit new heights in his weird habits tonight!

For much of the day he has been walking around with socks on his hands! He took them off to eat supper and then when i said to get ready for bed...yeah...socks back on his hands. So when I asked him why he had socks on his hands and his simple reply..."Mom, my hands are cold!"

I guess that tells it all!

MRI Today

We have our MRI today...

We have to be at the hospital by noon then be there for the next four or five hours. Not to be selfish, but can I say that I am starting the day off exhausted!

So now...the next two hours of my day is focused on Matthew not eating or drinking anything. I am like the..."Don't go in the kitchen!" Warden!

I have a feeling I will be ready to pass out this evening.

Did I mention that Jason is still in bed? Yeah...whole other blog!

Rab-BIT!

So we were coming from Children's Hospital today to JCPenney's to pick up picktures!

Anyway, Matthew is not able to say rabbit. It comes out Ra-hit. So Mary-Jo his therapist says to use the phonetic sign for 'b' to help him. He can say rabbit beautifully with that.

So, today I said, Matthew can you say rabbit.

He replied..."Ra-hit."

So, I went on to correct him and his reply this time was..."Mom, I'm not playing that game."

I waited for awhile then tried it again..."rabbit!"

"Mom, I can't talk today."

I gave up!

Matthew on a ball.

I was talking to Mariclaire tonight about what we had found out about Matthew today. So she wanted to talk to Matthew. When Matthew was done, Drew was asking to talk...Matthew looked straight at him and goes...Too bad!

Then...at lunch/supper...I was telling Matthew that if he didn't sit still I was going to take away his food! He looked straight at me and said to me...No mom...I take away your food!

Yet again, in the same meal, Matthew, said to Drew...I beat you down Drew!

It was too funny...so just to add to it all...I put in this innocent picture of Matthew that I found!

ANSWERS!!!

So...we met Dr. Reinhardt today. A rheumatologist at Children's Hospital. At first I was leary of him, but then he started to asks lots of questions. Finally he said that he doubted that Matthew had arthritis. That was a sigh of relief.

So he started poking and proding at Matt. Docs theory was that maybe matthew had a condition where he could move his joints more than most people could. So he moved legs and arms and wrist and fingers and toes. WHen I saw him bend his fingers almost back to his arm then pull his leg out to almost a 90 degree turn...I was like...yeah, I'd say he had movement! :)

So he said that he has what is called hypermobility of his joints! All it is going to take is some physical therapy. The down side to that is that it isn't a few weeks of it, but more like a few months.

I almost cried and jumped across the room to hug the doctor! It wasn't going to take any medication or any pills, but just lots of physical therapy!

I can do that! I can do exercises and therapy! Answers...FINALLY...answers!

However, we are still going to do our MRI on Friday just to be sure that it isn't something else too! But I am finally content.

What a champ!

Last night I stayed at Mom and Dad's. I wasn't working, but technically I was still on call and if I got called in during the night, I would have to have the boys be somewhere. Anyway...we just lay down to sleep and Andrew starts coughing. He coughed and coughed and coughed. I finally got him woke up to go downstairs to ask Grandma for cough syrup when he gets two steps down and he starts throwing up.

This is his norm. He throws up a couple times and then feels better and goes back to sleep and doesn't have any more coughing.

So anyway, he threw up like a champ, cleaned up and went back to bed without any further events!

The funny part was while we were in the bathroom to get cleaned up he just started stripping. He was half asleep still and I had to shake him and go.."Drew, what are you doing?" He was like...whoa! Then got his clothes back on! TOO FUNNY!

Week of Answers

I have one more night of work...then hopefully our week of answers will begin.

Wednesday we are on the highway again to Omaha to visit with Dr. Reinhart, a rheumatologist with Children's Hospital. We get a days break and then Friday is our big day with our MRI. Hopefully between the two appointments, we will find something out...something simple that is.

The other day Matthew Robert told me his legs were hurting and so I said...where. He said "Inside and outside." When I asked him to point out what is inside and what is outside, he pointed to his thigh for inside and knee for outside. So I'm not sure. Part of me just wonders if he learned two new words! :)

Matthew-isms

I'm so orignial on the titles on these Blogs!! HAHA!

Matthew has been in his prime these last few days!

The other night I was in the bedroom working on something and Matthew climbs on the bed and taps my leg and says...in Matthew language..."Mom, you need me, you call. I come right here!"

I was impressed with the sentence! :)

Then today he came across one of my stethoscopes and decided he HAD to use it. So he was trying to get it out and it was stuck. So he would pull then he would have to take a "break" and get a drink and then go back to trying to get it unstuck! He went back and forth like this for five minutes or so...HILARIOUS!

Then tonight we were making cookies and Matthew kept eating the dough and I said...NO MORE! He looked at me, put another finger in and goes...one taste mom!

Results

I didn't waste any time today calling Dr. Kronberg's office!

I got a quick return that the ultrasound was negative and showed nothing! I was able to breath again! :)

So although we found out nothing this time, we still have our appointments at the end of the month! I'm okay with that!

OCD

One of the on going jokes in Jason's family is about Jason's Dad's OCD tendencies!

This morning we were putting together valentine's and I had bouncy balls and little bubbles in them! Me being me, I was purposefully mismatching them.

Then Mr. Matthew comes behind me and matches up the colors! I mismatched them again, he matched them up again! It went on like that until I finally gave in!

Thanks, Papa K! HAHA! JK!

Little Room

We had girl's night last night at our house and then shortly after everyone left, I got called into work for a car accident with four victims.

So a few hours later I got to come home and finally crawl in to bed! When I woke up a couple of hours later, I was sleeping on about 6 inches of bed and being smothered by two little boys!

Oh! Did I mention we have a king size bed?!

Guilt

I was in Omaha with Matthew on Friday for doctor's appointments/tests.

I left Drew in O'Neill because I didn't want to have to worry about two babies in Children's Hospital when one could hang out at home with a sitter. Plus one less kid I had to tote around...I know bad mother again!

Anyway, the guilt sank in so while I was at Walmart I picked him up a couple Lego pieces to build. It's amazing how the kid puts them together! I think I would have difficulty with them!

So, early this a.m. he brings them to me to show me what he accomplished and says..."Sorry Mom, I had to get up early so I could start working on these!"

I loved it!

Food

I can't remember where we were or what we were doing, but it was Matthew and I. I was asking him what he wanted for supper and without a moment of hesitation he says..."Food!"



He has more and more of these one liners that remind me of his dad everyday!

A long frustrating wait!

Well, we had Matthew's ultrasound done yesterday (Friday). He was such a champ. In the morning I sat down with him and kind of walked him through what they were going to do with him. So when they took him back to the US room, he crawled up on the table, crossed his legs and laid there like a big boy! I was SOOOO proud of him!

When we were done, the tech had to go make sure it was all good and when she came back she simply said...."You know that if it was really bad you would be talking with Dr. Kronberg right away!"

I said, yes, thank you and knew that she probably couldn't tell me much more than that! Then to top it off, we would have to wait until Monday to get results!

However, my mind hit hyper drive about 90 minutes later. I was driving down Maple St. heading out of town and it all sank in! I started crying, almost to the point of hyperventilating and just kept thinking...so it's not REALLY bad, but what if it is BAD or not SO bad!

I mean I was there for the whole thing and it went smoothly other than when she was looking at the liver and the portal vein. She hung around there FOREVER!!!

Big Matt had just left us so I'm pretty sure that's why reality set it and so I called another friend and crying to their voicemail! It's all so frightening!

Dr. Kronberg is sure that they won't find any thing with the ultrasound. I know this makes me a horrible mother, but I want them to find SOMETHING that will explain my baby waking up at 2 a.m. just about every night screaming and crying. Or why he can't walk on certain days or why he won't walk stairs another! Tell me it's because he's growing too fast and I will be fine with it! Just stop telling me it's in my head! A child does not scream like that for a minor ache in their leg. A child who likes to run and play does not decide to just not walk one day! He may be cute, but he hasn't learned all the tricks quite yet!

Okay, sorry, side rant there! So now, we wait for the MRI and Dr. Kronberg wants us to meet with Dr. Reinhart, a rheumatologist. Lots of back and forth over the next few weeks.

I just thank Dr. Kronberg for doing all this. Okay, not for the hefty bills that are coming with it, but he said on Thursday when we saw him, "I would never forgive myself if we missed something!"

You can't be upset with a doctor for that!

More Testing

Matthew has been doing so good this winter. He has only been sick once minus all these leg problems. I was so proud of myself and I knew better than to say it outloud and jinx myself. He now has fought an URI and an ear infection! Oh well, I can manage those.

However, it brings me back to his legs! When the boys picked me up from the airport on Sunday night Matthew didn't want to walk. I thought it was because he didn't feel good, but am now pretty sure his legs were hurting. All this deduced from him crying and saying "My leg hurts."

After talking to Jessica, I learned that the previous day he had not wanted to walk down any stairs. Although that sounds minor, that is usually my cue that something is hurting.

So, I was on the horn to Dr. Kronberg today! After three phone calls and lots questions we are to this point:

This Friday we go to Omaha to do an abdominal ultrasound because Dr. Kronberg has been doing some research and wants to rule out and abdominal mass. Then on the 27th of this month we return for an MRI in which Matt will have to be under general anesthesia because of age and weight. The MRI will be looking for vascular issues.

So this is where we stand. Another few weeks of waiting and wondering. I just thank heaven for Dr. Kronberg.

Another Frustrating Day with Docs

So... We met Dr. Hasley today! Super nice guy, but he frustrated me!

I told him twice, and his PA, what has happened over the past 9 months and after examination he basically told me that he's fine and I need to stop worrying!

I left so frustrated and although I am perfectly content for my child to be healthy, it's frustrating because my child should NOT wake up and just not walk for the day!

So, now I get to sit here and watch him like a hawk! Then, if it happens again, I will call Dr. Kronberg!

Never a dull moment in this house!