EI evaluation

Many weeks ago I contacted Early Intervention (EI) because Macsen is having trouble sitting and won't bear any weight on his legs. They had to evaluate him to see if he qualified - he had to be more than 25% delayed to be eligible for services. Well, yesterday we got the results and our little guy is pretty delayed - he's scoring at a 4 month level in some things up to 8 months. He just turned 10 months. Logically, it all makes sense. He has spent a large part of his life focused on healing from major surgeries so sitting and crawling were very secondary. But emotionally I am feeling sad and overwhelmed that he is so far behind. Things that just came so easily for his sisters, for other babies I know, seem extremely hard for him. Have you ever tried to teach a baby to crawl? To stand? Despite raising 2 other kids I never have. With the results come more appointments. Counting the 2 we have today we will have had 4 this week. He needs the help and I will do everything we can to get him what/where he needs. Just a few extra challenges. One of the biggest challenges isn't for Macsen or for me & Aaron but for the girls. During appointments, especially ones we have to drive to (Macsen cries, coughs and vomits if he doesn't have me sitting with him distracting him) they are stuck in the car - waiting in parking lots with Aaron and the DVD player on. Not exactly fun on a weekly basis. But they don't complain, sweet girls. I hope they don't start resenting him. One day, when M travels better,  I'll be able to make the trips to Dothan without Aaron so he can stay home with them.
His cardiology appointment in Pensacola on Monday went really well. He weighed in at 16 lbs putting him in the second percentile! He was very good during his echo - lying very still for about 90% of it. He's a very busy baby so that's quite a feat. His doctor said there was virtually no change from his echo last time. Great news! No tricuspid valve leakage. His BP looked good. ?His oxygen levels were in the low 80's - wish they were higher but they are still acceptable and pretty typical. We even took him off his heart function med and will go back to see her in September. The girls will be in school which will complicate our little "make every cardiology trip into a mini vacay" plan but we'll deal with those logistics when we get there. When I asked his doctor about the remnant of extra skin still barely visible at the base of M's neck she used a term I have never heard - asking every doctor/nurse/therapist that has ever treated him for anything. She called it a cystic hygroma and said it looked really good. Of course the googling began almost immediately and I have found a support group to ply with queries and questions. Got to love the internet! If you google it be forewarned there are some very severe cases/images that might make you very concerned for our little dude. Like I said his is almost gone and I am relieved to finally have a name and research to turn to for reassurance.
For now we have a few weeks left of summer we intend on cramming in another just for fun beach trip - no appointments!!!!!- a birthday party for C (7 yrs old!!!!) school shopping and a trip to Birmingham to the Mcwane science center. So excited!

Happy Friday

   We had a great morning playing with new friends today and Macsen showed off by rolling all over the N family's beautiful house. We met them at Moe's restaurant  in Enterprise because their girls and our girls started chatting. Sometimes I wonder how we met people before kids :)   Turns out Mr.N is also from Gig Harbor in Washington which is Aaron's childhood home. We also hung out with another great mom (coincidentally also from Washington) and her beautiful little girls who we met @ the Y while we were both pregnant last summer. So it was Macsen + 7 girls. He loved it! Here's the N family's awesome house - check out all the custom built ins and upgrades - I would love to do some of that to our house.

http://www.zillow.com/homedetails/202-Grayton-Ln-Enterprise-AL-36330/109258094_zpid/

   Another physical therapy appointment today in Dothan. M was tired from a morning of batting his eyelashes and showing off his mad rolling skills but he did his 45 minutes with just a little groaning and growling.

And we picked up a few surprises at Michaels for our Treasure box - a box of art supplies and special little gifties we use to reward ( read: bribe) the girls for extra hard work/extraordinary acts of kindness or cooperation. It's amazing what a tube of glitter glue can get you in this house:) Here are some of the girls' masterpieces from this week's homeschooling adventures

Mommy mermaid and a baby mermaid

C's fancy Mermaid

Macsen's new trick

Macsen is 9 months old now and really is a joy everyday. He smiles, chuckles, cuddles and hugs the whole time he's awake. Nights are still rough but we have started putting him in the cosleeper and he's tolerating it. It's propped on books and we have a pillow in there - a big nono I know but it keeps him propped so he doesn't aspirate on his ninja puke that sometimes surprises us at night - HI YA! He's chugging down the milk - still gags with food and won't take more than a teaspoon or so. He's rolling like a champ - back to front and front to back - and sitting for little stretches without toppling, and pushing up on his arms while on his tummy. I am so proud - he couldn't do any of these a month and a half ago! Hooray for physical therapy! We had an evaluation today with Early Intervention who will hopefully get us connected with other services to help catch him up. I'd like help trying to overcome his constant gagging, get him interested in eating, help him to learn to stand and bear weight on his legs, and start working with speech to help well... With his speech :) he squeals and screeches but he stopped saying vowels after his last surgery. All kind of normal for little people that have had multiple surgeries I just don't want to sit back and hope he catches up. He has developed a very convincing gag that he likes to do as his noise of choice. I think he likes to see us all jump up and come running with towels - waving our hands and shouting/pleading "No, no, no Macsen!" He has trained us well. Watch the video above or on YouTube with this link http://youtu.be/jE5saICjXAc
I was very disappointed this week to find out we were in fact NOT eligible to participate in the exciting HLHS research being done at the Mayo clinic pertaining to stem cells and regenerative therapies. Apparently after reviewing his medical records the pediatric cardiologist on staff felt his variations - specifically what he called unbalanced AV canal (referring to the fact that Macsen's right atrium is larger then his right vent - which we knew about we just didn't know there was a technical term) exclude him :( In fact, he felt that his defect is Unbalanced AV canal instead of HLHS - apparently 2 different defects with some overlaps. Yet again an example of how little standardization there is sometimes when talking about these rare defects. 1 doctor sees one thing and another sees something else. I was pretty upset with the new label - I know that is all it is and doesn't change anything- (Our favorite cardiologist still says its HLHS so there!) and not being able to actively "do something" to help speed up new therapies for Macsen... something he will desperately need.  Current practices and knowledge are better than 30 years ago but still not good enough to insure Macsen has the opportunity to have a full healthy life. I want to help make that happen. The researcher we were working with felt confident saying any new therapies would be applicable to Macsen - he just couldn't be part of the study. 
In happy news Macsen is now almost 16 lbs! We are enjoying our summer - swimming, camping, baking gingerbread cookies with the girls (they wanted to see if they would come alive and watched them for a full 5 minutes to make sure nothing moved before they bit their heads off.) Life is getting a little easier everyday as we all settle into the rhythm that is working for us. Aaron is FINALLY on day shift again - he's been stuck on night shift for 18 months and it was very hard on us as a family having him gone all night. Now he's here for story time with the girls and for all the various middle of the night criseses that are inevitable with 3 little kids. I am very very thankful to have him home at night :) Very very... Very