First, returning to work. Today is only my 8th day back, even though I went back on the 9th. My first two weeks were 3 day weeks (to help ease back in to the swing of things) and then this week is a 4 day week coming off spring break (which was Thursday - Monday over Easter weekend). It was hard to have to get up early again and get everyone where they needed to be on time, but we made it work, and I only have 34 school days to return for before the end of the school year (I'm not counting or anything...) Each day has gotten somewhat easier and I enjoy the 'break' from home, though I miss my little ones too. We are still trying to figure out what to do when the summer's over, so again, prayers in this area would be very much appreciated.
The Friday before I went back Ally had her 1 month check up with the pediatrician. Overall that went well; she couldn't get her immunization because of the timing of when she got the first one in the NICU, but the doctor said that was okay, she could get it at her 2 month appointment with the others she would receive. Also, her weight was terrific- 6 lbs 8.5 oz! She is really growing and gaining weight fast so I am really pleased with that. She still takes bottles of pumped breastmilk with 1/2 tsp of formula mixed in to take it to 22 calories, and I guess it is really making a difference! The doctor also wanted her started on a liquid vitamin, which is mixed into her bottle once a day. I'm looking forward to her next check-up in early May to see what her weight is and how the doctor feels she's doing overall. The other day I got on our bathroom scale with her, then without her, (as accurate as that is, I know) and it showed a difference of 8 lbs! My hope is that at her next appointment she will be at least 9 lbs, which means she would have more than doubled in weight since her birth.
The day before I went back to work Ally had a follow-up appointment with neurosurgery. The doctor was not available, so we saw the resident that we had seen for our consultation when I was still pregnant with her back in February. He looked at her most recent head sonogram (ordered by the neurosurgeon at our last appointment and done about a week later) and told us some not so great news: the possibility of a shunt is looking more likely. I didn't see the images myself (which next time I intend to ask them to show me the comparison between images so I can see for myself what they see) and this was a different person, so part of me wonders (and is hoping) that maybe the doctor will tell us something different since at our first appointment he seemed pretty optimistic about her condition. The resident has ordered an MRI to get a better idea and better images, but we still don't have a date for that yet. It has to be coordinated with several people, because infants have to be sedated for an MRI so they will be still and they can get what they need (even if a baby is asleep, the machine can be loud and it would probably startle them awake). I was really disappointed in this news, but we always knew it was a possibility, just one I had become hopeful that we could avoid. Again, prayers in regards to this would be appreciated.
On Monday we had an appointment with Early Intervention. This was a preliminary visit to get to know the program and to determine her eligibility. Because of Ally's diagnosis of Dandy Walker we figured she would be eligible, but everyone has to go through the screening process, and plus we are new to all of this so it was good to find out more about their services. Right now Ally's 7 weeks old, so a lot of the questions they asked were hard to answer and almost didn't apply to her (Are there certain places she enjoys? She's a baby, she hardly knows where she is!), but we answered them as best we could. They determined she was eligible, so in the future she will be eligible for any services needed through them; speech therapy, physical therapy, etc. She can stay in the program until her third birthday, or until she transitions into a program through the public school system, whichever comes first. Public school pre-k programs can take students as young as 2 (Ally would be 2 and a half if she went this early) if they have issues like developmental delays, are on the autism spectrum, etc. We LOVE the preschool Luke attends and already have Ben on the list for 2016 - 2017 before he would start Kindergarten. We would love for Ally to go there too but realize that she may be unable to attend this preschool depending on her development at the time and a public school pre-k may be the best thing for her.
As for our home life, things seem to be calming down. We had delicious meals delivered to us every other day for a month (THANK YOU to our wonderful friends who did this for us) and are just now finishing up the leftovers, which means we will have to start cooking and buying meat at the grocery store again soon. Ben has actually somewhat transitioned to the big boy bed (though last night was somewhat questionable, but the other nights he has done pretty well) so we can soon move Ally into her room and the crib anytime we feel she is ready. She started taking tub baths and LOVES them (she would scream her head off during her sponge baths, but she enjoys having the water poured on her and cries when she has to get out and dry off!). Luke and Ben are doting big brothers, and Ben especially has transitioned well. He enjoys being face to face with her when she is on the floor (he practically lays on top of her, which we have to watch and make sure he doesn't squish her) and kisses her often ('kiss kiss'). He even tries to be helpful when she cries by saying "It's ok Ally" (except in his toddlerish way which is super cute) and occasionally trying to give her her paci. Luke often gives her kisses too and is helpful when we ask him for help. Ally is lucky to have such loving, protective big brothers. We hope to make it through the last month of school for both Luke and I, and then enjoy our summer together with swimming, library storytime, and playdates with friends. And maybe an impromptu vacation and trips to see family thrown in there as well.
We are also excited to get more involved in the Dandy-Walker Alliance events and supporting them. May 17th we will be walking (wish I could run it, but I'm not in shape- maybe next year) the Carter's Run for Dandy-Walker 5k with my family, and Luke will be doing the 1K kids fun run. Afterwards we will be hanging out at the family fun festival. And it was just announced that June 22nd is Dandy-Walker Alliance day at Nationals Park, so $6 of your ticket cost goes to the alliance. We plan on purchasing our tickets very soon and would love for more friends and family to join us! We look forward to getting to meet other DW families at these events and learning from their experiences as well.
Thanks for your prayers and support. Please keep them coming. We need them more than we can describe here, especially as summer approaches and goes by SO fast. Hopefully summer will also afford us a chance to get to see many of you who we do not regularly get to see, and you can meet Ally in person for yourselves and we can all catch up!
