wolfhirschhorn.org

I didn’t have enough time to complete the whole costume in time to enter the 2016 Halloween contest, but I still wanted to show the final piece. We had such a blast! These guys were the ONLY characters from Up. It was the best. They had so many compliments and photos taken. Hope everyone had […]

Well, its been a little while since I’ve posted an update about Nathaniel. He recently had a Nasal tip reconstruction and the right nare had to have bone shaved since it was completely obstructed. Other than that, he’s been doing very well. I was a little saddened last night though and it’s carried over today. […]

Well, it’s a little short of a year since my last post. Nathaniel is now 4 years and 3 months….he’s still hopping around, can pull himself up on things like the sofa, table, and the edge of my bed, but will only walk with his walker when he wants to. He’s like a puppy…constantly chewing […]

It is official, Nathaniel can sit!!! He’s always made it known that he wants to sit by rocking/doing a sit up and we catch him and hold him to sit. But one night about a week ago, we were watching the original Superman movie in bed and he was trying to sit up so I […]

Nathaniel has had what looked like fluid-like red bumps on his lower back from the time he was born and they stayed the same….never changed. But at the end of December I noticed what looked to be a heat rash under his pits….this was a week before admitted for Pneumonia. I figured it was probably […]

I was hoping I wouldn’t have another update so soon. So, as you may have last read, Nathaniel had a touch of the stomach virus on the 22nd (Mon.) and saw the doctor on the 26th (Fri.)…..on the 29th (Mon.) had to go back to see the doctor because he hadn’t been eating and had […]

Well, good news! Since the on-call/ER doctor took over Nathaniel’s care and had me document every meal, Nathaniel has gained so much weight. I went a little beyond and started documenting calories. Turns out he was getting enough food to get full, but I wasn’t managing his calorie intake as well as I could have. […]

On the 19th, Nathaniel had an ear infection and was put on an antibiotic. The 20th, he had his routine appointment with his ENT to see if his ears were big enough for tubes…they weren’t. This past Monday, he had an appointment with his neurologist and it was decided to up his Keppra from 1ml […]

Well, things have been going pretty good. Nathaniel received his Water Way Babies neck ring last Monday. That Wednesday, I was too impatient and so I took him and his 2 brothers and sister swimming and he got to use the ring. He looked so cute just floating in the water. He is a thumb […]

Well things had been going great, still are, but Nathaniel had a seizure last Thursday. It lasted about nine minutes and afterwards he was shivering and I’m assuming in pain from the seizing because he was moaning for about another 30 minutes. It took a while, but he slept the remainder of the night. He […]

I haven’t had to vent too much because nothing new has come up….Thank God! I do however, get to brag! Nathaniel is doing so much more. Before, I was still having to swaddle him /tuck his right arm around my back and hug him tightly while he fed with the bottle and now he wants […]

Yesterday we had a meeting with the geneticist, our actual face-to-face meeting. Got better news than expected. Of course, it’s still too soon to predict his future health. But the fact that my husband was there to discuss Nathaniel’s diagnosis and prognosis was a big step. He finally understood why I was so glued to […]