Life is going to keep moving

Jayen's second tooth came in today. I think I have finally realized that no matter what I do or what hurdles we will have to jump, life is going to keep moving! Jayen is getting bigger and I just can't seem to stop him. My baby isn't a baby anymore. What a grown up little man he is becoming.
We did not get to meet with OT and PT last week, so they rescheduled for next week. It has been a month since we saw someone. I am very excited for the OT to come and see Jayen when he is eating. I just can't get him to eat anything, even with the new teeth. Today I tried giving him a cracker and he made the strangest face when it was in his mouth. I thought every kid liked crackers.
We will also be starting physical therapy at a center in Papillion on the 1st of September. (This will be a CRAZY week. Mom starts working again on Monday and Tuesday, Dalan's open house for preschool is Tuesday night, physical therapy on Wednesday, and OT and PT on Thursday.) We will try to keep everyone up to date about what is going on!

Yippie! The occupational therapist is coming with our physical therapist next week. I have so many questions and concerns to talk to her about. Jayen is still struggling eating. We had another weight check today and he dropped again. He is now 17 lbs. 11 oz. He dropped 4 ounces in two weeks. I am just not sure what to do. The doctor isn't too concerned, so I guess I shouldn't be either. Currently, Jayen is in the 10th percentile for weight. The doctor feels that according to older brother and Jayen's weight before meds, Jayen should be closer to the 3rd-5th range. We will go back again in 3-4 weeks and recheck. I just worry that he is going to be one and still not eating anything. We haven't even gotten through all the first step baby foods and he is nine months old. Alright, this mom will try to stop worrying.

We just got our family pictures back! I'm so happy with them. Thanks Amanda Rulong Photography. You captured my kids perfectly.

When we went to the doctor the other day, Dr. Toth asked us if we thought our once every other week therapy was enough. I said no and he agreed. He put in a referral for us to see a pediatric therapy center in Papillion. I called today and have our initial consultation on September 1st. I'm so excited!! I know he is delayed, but hopefully with lots of intervention he will soon catch up!

Took Jayen to the doctor today because he has had a rash on his face that has now spread everywhere. I thought it was just a teething rash, but after four days and it spreading I figured that wasn't the case. The doctor wasn't sure exactly what it was. He was not worried about it. It isn't hives and won't hurt him. There is a possibility it is from his medicine. The doctor wants us to tak to the neurologist about any side effects they have seen from the Topamax.
One more thing....Someday this will all be over!

6 Weeks off ACTH

YEAH! 6 weeks off of the ACTH and seizure free (I think)! It is so hard to tell if he has had one or not. Sometimes I think he might have had one, but I'm just not sure. His EEG is still looking good so as of now I'm just going to assume that it is nothing.

9 Months Old

Jayen is nine months old today. We had an appointment with our wonderful pediatrician. Jayen was cleared for his 6 month shots (only 3 months late, not too bad), but he was concerned about Jayen's weight loss. He weighed 17 lbs. 15 oz. and was 27 1/2 inches long. He has dropped almost 2 lbs. I know, I know, he had a lot of extra weight. He can afford to loose some, right? Most of his bulk was water weight, so the doctors were hoping that he would maintain his weight and kind of just grow into it.
I expressed my concerns about his eating habits. He is refusing almost everything. His appetite is so small then when I give him his medicine in the morning he is almost full from just that. He refuses ALL solids. We have to force it down. We've tried almost everything and he just refuses. The doctor wants us to come back in two weeks to do another weight check. We will keep an eye on it.

Results are in...

Ok, finally heard back from neurolgoy about EEG and EKG. I'm told "both would read as normal". I grateful but reluctant at the same time. How did it show up on one test but now it didn't on another. Do we just ignore that it ever happened now? Everytime he makes a different move I analyze it. Was it? Did he just have another seizure? Do I need to call the neurologist? Will it happen again? I never know what to do.

When will I not be afraid anymore?