this kid has timing

From the day she entered this world eight years ago - my Molly has had timing! It is certainly not my idea of GOOD timing, but it's timing none-the-less. My head is still spinning and I am extremely grateful to Disney Junior and basement playrooms at the moment - as well as for the ability to have a hot cup of coffee this morning as I write what's been going on.

A week ago - Monday the 11th - Molly woke up sobbing in pain at 2 o'clock in the morning. The intense stomach pains scared us as this is not typical for Molly, nor does it ever happen in the middle of the night. We called the on-call pediatrician and they suggested getting her seen. So, off Molly and I went to the ER. The nice thing about going to the ER at 2:30am - is there is usually nobody there - and since Molly's pain was presenting quite like appendicitis, we got right in. They did an extensive abdominal ultra-sound which revealed a perfect looking appendix (phew!) but showed multiple swollen messenteric lymph nodes. I had to look it up and have Dr. C explain this to me. Basically you have lymph nodes all over your body. They get swollen when there is some sort of infection in them - viral or bacterial. They cause a lot of pain and some patients were suspected of having an appendix rupture and opened up on the operating table only to find a normal appendix and lots of swollen lymph nodes. While in the ER - they dipped Molly's urine and concluded it was suspicious for a UTI. They started her on antibiotics and we returned home.

Fast forward two days to Wednesday the 13th. We had Molly's 8 year check-up. Dr. C spent a ton of time with us as there are a lot of legitimate concerns. We found out there was no UTI - hmmmm.... Also, we raised her newest med this day - guanFacine or Tenex. It's for ADHD, but it's also a blood pressure lowering medication (this becomes important). Wednesday she was off. She was tired, she could barely bare her own wait, she had no emotion behind her speech, she was slurring, she was stumbling - you get the picture.

Thursday was her birthday - the excitement of that seemed to give her a little pep in her step - she smiled a lot, she looked tired again by mid-afternoon but it was definitely better. Friday we took her to NYC to have tea at the Plaza Hotel and visit FAOShwartz - It might have been her favorite present ever. As she and I sat on the train, I barely knew who I was riding with. She looked so very tired, and so very ill. It was her first train ride, normally she would have been bouncing around with excitement, but she sat curled up in the seat - so anxious about every stop we made, looking like she should just fall asleep. She was barely able to wait for a cab from Grand Central to the Plaza and then she collapsed in her stroller-chair when Chris met up with us. She didn't move from her chair but a few times. To see a few things in the Eloise store, to dance on the Big Piano at FAO (which she abandoned early because she was too tired) and to look out Daddy's office window. She passed out on the car ride home, while playing iPad.

Saturday and Sunday were more of the same, but getting progressively worse. She couldn't form sentences, she was so spacey we had to repeat ourselves 3 or 4 times. She complained of feeling clumsy, of a headache, of not being able to focus. By Sunday she was walking into walls, slipping off step stools, falling off the couch and just looking like she was asleep sitting up. I should also mention that from Thursday on she has had black stools (I hope that's not TMI). So, around 4:30pm on Sunday - I called the pediatrician. He suspected the Tenex - which I didn't disagree with, but since he didn't prescribe it, he suggested hanging tight and talking to Boston. At this point Molly had curled up in my lap and was crying because she just didn't know what was wrong but she just didn't feel well. So, I followed my instinct and called the on-call epilepsy fellow up in Boston. His initial reaction was to hold meds, but since we couldn't tell if the increase zoneyness was actually seizures and because she seemed to be spiking a temp and because there were just so many factors - he suggested she be seen in the ER. I had to agree with him.

Now remember what I said about timing. We headed to the ER around 5:45pm last night (Sunday). Chris's car service was picking him up at 3:45am Monday morning to go to MN for business. This would surely be tricky, but her health and well-being comes before tricky parental planning! Luckily my amazing parents and my awesome friend Amy both volunteered to help should Molly be admitted (which she almost was). So, anyway - we got there, and they put us right back in a room. They wanted to check some things out, draw some labs and see if they could get stool. When they came back to do vitals - things got interesting. Molly's blood pressure took a dip. So the plan for labs changed from just getting labs to getting labs and putting in an IV and giving a bollus of fluids - which did bring her blood pressure back into the normal range after an hour. The team at Yale talked at length with the team in Boston and they decided to have us hold meds and call the team in Boston first thing this morning (which is what I am doing right now).

Molly is still curled up in my bed sound asleep. The two littles are down in the playroom, as they got up about 5:45am! Kennedy has an awful cold that just won't go away, and Zoey is every bit a feisty almost 18 month old with a drippy nose. Chris got on his plane successfully and my wonderful father is going to come down so I can do a few things today (like clean the bathroom!). Tomorrow, Molly and I travel to Boston to be fitted for her ankle braces and meet with the orthopedist to discuss our next steps.

The journey of a special needs parent is filled with a lot of twists and turns, a lot of bills and a whole lot of difficult decisions. However, it's also filled with cherished memories, millions of moments you don't take for granted, and big words that make you sound really smart. Heck, I pulled out Mesenteric Lymphaditis last night. :o) Thank you for your continued good thoughts and prayers for our family and for our Molly. She truly is a special spirit and we are blessed to be her parents.

And if you're interested in reading more from me, I am a regular contributor to the blog: www.smartappsforspecialneeds.com.

<3 Amanda