Annual eval meeting

We had Ben's annual evaluation meeting to continue services for Early Intervention. The Developmental Therapist that evaluated him a week ago was there, as well as his service coordinator and his physical therapist. The DT went first and she is not recommending any services at this time. She said she only found him about 4% delayed, and a lot of that could be explained by him not being as cooperative for her because the day after her eval, we found out he had ANOTHER ear infection. So, he was kind of cranky when she came. Other than a few things he would not perform for and we could not assess, he did remarkably well. His only delay was in gross motor-about a 30% delay, which we kind of knew would happen. The speech therapist also called in for the meeting and said she was, obviously, not recommending services at this time. And again said she would recommend that Ben follow up with a pulmonologist to assess whether or not he may have Reactive airway disease, which is a precursor to asthma. Not totally out of the realm of possibilities since asthma is prevalent on my dad's side of the family. Then his PT talked and while she did not find a 30% delay, she did find him delayed in gross motor with regards to higher level skills. As well as Ben still has low tone in his upper body, so she was recommending continuing services on a monthly basis.

Basically, Ben does not go up and down the stairs yet and does not jump yet. These are all higher level skills that he should be doing at around 27 months old. Of course, he did not even start walking until 17 months old, so it may just take some time for him to start doing these things, but I am sure he will get there. Also, there is the fact that every time he tries to go down the stairs, his sisters tell him, "STOP, Ben, you don't walk, you bump bump down the stairs." They are just trying to keep him safe by making him butt scoot own the stairs, but it obviously doesn't help his progress with walking down the stairs. :) So, we continued our IFSP and Ben will continue getting PT once a month. The service coordinator offered transition plans, but I declined because we will not meet the criteria of our school anyways, and we will be keeping him at Montessori when he turns 3. So, it is not necessary. Other than that, everything went very well and we are very happy with the progress Ben is making!

Right before Crazy hair day at school-hence the blue hair

Speech evaluation

Ben had his speech evaluation tonight. He was a little suspicious of the therapist when she came in, but warmed up quickly and started feeding her pretend food. We did the parent portion first, where she asked me a bunch of questions. I did mention that Ben always bites his tongue at every meal. She said she would watch him eat at the end. When she did the eval, he was very cooperative. Very different from the evaluation we had with the developmental therapist. Of course, after his DT eval, we found out he had an ear infection, (yes, another one! Second one in 2 months since he has had his tubes put in!) So, he was probably in a bit of pain, hence why he was not as cooperative for the DT as he was for the SLP. She did a series of tests on his comprehension as well as articulation. She then had him eat some bread and watched him chew. Boy was he happy to get more food after he thought dinner was over :)

She did give us some suggestions to help him stop biting his tongue, but said his chewing patterns were totally appropriate for a kid his age. She also scored the test while she was here and said he has no delay at all anymore. So, he has gone from a 16& delay at his NICU follow up in December to no delay at all in February! We are SO happy with this! She said she will send the official report in the morning before his annual eval meeting. And she will call in to that. But, she obviously has nothing else to offer us in terms of services unless we have other concerns with feeding in the future.

One thing she also did mention was that she was a bit concerned with the many upper respiratory infections he has. And the fact that his belly is so distended. I said we had mentioned his belly to a few teams. No one ever seemed concerned about it. She recommended calling a pulmonologist about his upper respiratory illnesses, as this can impact speech as well and it can also be a cause of the distended belly. So, we will be calling speech soon as well too. We have so many teams following Ben, what's one more, right? Other than that, there were no recommendations. Which we were pleased with.

2 ambulance rides

Just now getting around to posting about this. Last weekend Ben got to have 2 ambulance rides. He has had a cold for going on a month now. Last Saturday, he spiked a fever of 101 at night. We gave him tylenol and hoped it would be better in the morning. When it didn't get better and actually went up to 101, and his cough sounded wetter, I called the on-call pediatrician to see what he wanted us to do. He said, since Ben was not having trouble breathing, it would be alright to take him to our urgent care to just run a flu test and get an x-ray, rather than the ER and expose him to the many many germs there. So, I got him ready to go to the urgent care. Right as I got him in his car seat, he threw up everywhere. So, I got his car seat cleaned up, Joe got him cleaned up and we went to the urgent care. When I got to the urgent care, his breathing changed. As soon as I got him back, they got his oxygen saturations and they were 86. His breathing was also becoming really labored. He was struggling. So they got him on oxygen and gave him a nebulizer treatment. Unfortunately, all they had was albuterol. He can not have albuterol. We always give him xoponex when he is at home. Albuterol causes false EKG changes (which we found out the hard way later on) and an extremely high heart rate.

Feeling very sick

On the way to Lurie

The dr called an ambulance to transfer us to Edward ER. On the way there, he had oxygen the whole time to keep his O2 up. When he got to Edward, he still had oxygen in the low 90's so they gave him another treatment with albuterol and then one more about an hour later and more oxygen. The doctors were in constant contact with Lurie during this time. The ER doctor told me he would advocate for me to stay at Edward as long as there was nothing heart related going on. And he did. We were thinking we would probably be at Edward due to possible pneumonia or RSV, Flu, or maybe even Respiratory Airway Disease. Which is a form of asthma seen in young children. Ben spiked a fever again around 4, so they gave him more tylenol. After the tylenol, he felt better and wanted to eat some yogurt, which he promptly threw up all over his bed. And then wanted a chicken nugget, which he again threw up all over his bed. It was after that his nurse put him om a liquid diet. It was around 6:30 that the dr was on the phone with Lurie and they saw the EKG changes. I asked if it could possibly be due to the albuterol and if we could wait until the albuterol left his system. I was told no, it was definitely heart block due to some other levels and we needed to be transferred to Lurie right away. So, off we went again in another ambulance.

Feeling a bit better

We got to Lurie and they did another EKG around 10PM and it was fine. No EKG changes. But he still had those elevated levels to be worried about that could possibly mean TCAD or rejection. So, we had to repeat all of those labs. But, he was looking to be in much better spirits by about 1 in the morning. By the next morning, he looked a LOT better. All of his respiratory panels came back negative too. No flu, no RSV, nothing like that. So, they figured it is a virus they hadn't tested for. The doctors did their rounds and said "if he looks this good and his echo comes back good, you can go home today." Well, his echo came back great. So, they decided that those elevated blood levels were due to a very bad infection that his body was having a very hard time fighting off. We got to go home that Monday. He didn't have school on Tuesday due to the extreme cold, so he even got an extra day to rest at home. He had a visit to the pediatrician on Thursday and she said we could go down to every 8 hours with his breathing treatments and if he does ok on those, then twice a day and then once a day and then stop. So, he has been doing overall much better! We are VERY happy that it was not heart block or rejection, even though it did happen to be an infection that he has trouble fighting off.

Trying to escape. Too many cords!

Finally discharged!