I Should Know By Now...

Every time I post about Ben doing better, he gets much more sick. I need to stop posting about his improved health.

Ben woke up feeling pretty crummy this morning. I too woke up feeling pretty bad. Mike took off work and Ben, Mike and the nurse went to his doctor while I went to mine. I tested positive for Strep Throat and Ben is being treated for Step (they just decided to treat since I have it and he already needed antibiotics for his other stuff), a mild case of pneumonia and/or a partial collapsed lung and a double ear infection. Add this to his cold and the highest fever he has ever had and he is feeling pretty terrible. My mom came down to help Mike take care of Ben until I'm not contagious (which will be Saturday at 2:00 p.m. and the countdown is on).

So many of our CHARGE friends are really sick right now so I do feel fortunate that he is able to be home with us instead of in the hospital. I just hope Ben and all his sick friends feel better soon.

Doing Better

Ben's swelling is all gone today and he seems to be doing so much better. His face/chin has a rash and I'm not sure if that is from his allergic reaction or just from the cold. I sent him to school today for the morning and I'm hoping he will have enough strength to stay the whole morning. I'm so hoping this is the last illness of the season for him.

Sick again and swollen

Gosh, I am so tired of cold and flu season! Ben came down with a bad cold Saturday night/Sunday morning. He is home sick from school today. He has been sick on and off (more on than off) since the end of December. Being in preschool has really exposed him to so many bugs that he's never been exposed to before since he has mostly been in isolation during the winter season. I'm just thankful that he is strong enough to fight these illnesses off at home instead of the hospital. I just feel so bad for him every time he gets sick... especially because it is shortly after he just got over something else.

In addition to the cold, he is still having bm issues and this morning he woke up with a completely swollen face and swollen eyes that looked like little slits (after talking to the doctor they think it is allergy related because his window was open all night). He takes daily allergy medicine and drops for itchy eyes... but he still can't handle an open window during spring when everything is blooming. We won't make that mistake again.

So Proud

Ben's sign language has really taken off these past few weeks. He has always been pretty good identifying the proper picture card when given two choices and shown the "sign" for it, but he rarely signed anything to us. The only sign he would ever use was "more" and that one he used all the time. But recently in school, he is trying to copy everything they sign to him... which is AMAZING and I'm so proud of him. He is able to sign one and five when shown the number card only, tries to sign about 6 letters of the alphabet when we sign it with him and is trying to copy us signing about 30 other basic words (table, cat, bear, stand, swing, etc). It is like it finally clicked for him and he wants to learn how to do the signs instead of just knowing what they are when we sign to him. Hopefully after learning the signs, he will be able to use them independently without prompting... but that is a BIG next step.

Below is a picture of Ben signing "bear". He was signing it during Mickey Mouse clubhouse because he thinks Pete (the cat) is a bear. Can't say I blame him, I think he looks more like a bear than a cat... and I'm sure our other Mickey fans out there can attest to that!

Appointments aren't so bad with this...

The waiting for doctor appointments USE to be the worst!! Keeping Ben entertained (for hours sometimes) when all he wanted to do was lay on the floor (which I wouldn't let him, eeiccckkk) was difficult, to say the least. Until one day I decided to bring his portable DVD, Mickey show and prop it on his favorite mode of transportation... and VIOLA!! Appointments are a breeze now and his car is the coolest ride in town.

Potty Trouble

I won't go into the nitty gritty for obvious reasons, but Ben is having a rough time with bowel movements lately. I just can't figure it out and I feel so bad for him that we don't know what else to do. We give daily laxative and have increased the dose. We've also had to rely on enemas every few weeks to get a movement but then the cycle starts all over again. Sometimes we think this is what causes his retching/vomiting episodes. The strange thing is when he does go, there doesn't seem to be any reason why he would have trouble passing it (very loose). I'm hoping a blog reader out there can shed some light? I'm worried because the research I've done implies it could be related to a spinal cord problem. But I don't want to jump to conclusions yet... things in CHARGEland never end up being what they seem.

We Have a Date...

We finally have a date for Ben's surgery this summer. On August 13, Ben is going to have his testes descended (hopefully laproscopically), his airway scope from ENT along with a look at his nose (which is still open and I'm now only dilating ONCE a day - YAY) and ears. This surgery was difficult to plan because we needed three surgeons in the OR (Urology, the doc who runs the Laproscopic machine and his ENT). Unfortunately, because his Urologist is the head of the department and isn't in the OR that much we weren't able to coordinate a date he could do with our regular ENT. Another ENT attending is going to have to do the scope. We are so hoping for some improvement on Ben's airway... even if it is just a little. Having his nose open and his regular wear of his PMV (speaking valve) has to have helped, right?