Halloween 2015

After 3 years here, I finally realize I only need one bag of candy to hand out - can you believe it? I’ll take it. Makes for a chill evening! Nora only went to about 5 houses. Since her bucket is small, it filled up fast with mac-n-cheese, animals crackers and toys! 

Nora was Minnie Mouse for school, became a ladybug for beggar’s night and Hannah was simply a kitty. 

I'm all about using last year’s costume!

Two Days Home + Hannah Evaluations

This past Saturday was lovely; haircut, Little Mermaid at Taft with Nora, then out for a friend’s 40th birthday dinner.

Little Mermaid was awesome. Way better than Snow Queen. Nora’s favorite part was the eels’ glowing tails. 

Had dinner at Sprout in Mt. Adams - I couldn’t even remember the last time I’d been in that neighborhood! At 11:30 party buses were dropping off hoards of drunk youths in costumes. It was nuts. 

I took Monday/Tuesday off to not only take Hannah to an appointment, but to organize my basement. The girls would still go to the sitter. Oh yes.

It was great - I was giddy getting those plastic bins at Target! Mainly I wanted to shift the girls closets; seasons + sizes. Just BIN everything up! I also piled up all the baby gear - goodbye! Hello space! Very satisfying. 

Monday AM was Hannah’s annual evaluation for Help Me Grow. A full house of therapists to ask questions and work with Hannah. She’s behind motor skills even for kids with Ds, but they and we know it’s due to the heart surgery setback. We just continue to work on strengthening those arms. 

We need to work on communication; learning basic signs and commands such as “Give it to me, Hannah.” 

Her eating and straw drinking improves. Hannah actually lifted a “loaded” spoon and ate it on her own! Everyone was very excited! We will continue to get her to eat on her own and try all foods with her. 

On Tuesday, we had a 10am evaluation at the Thomas Center [for Down syndrome]. 10am is a really awkward time; it’s Hannah’s second feeding then nap time. Ugh. Of course she fell asleep 10 minutes before we arrived and I sat in the back of the car in the garage to give her half a feeding before going in.

We didn’t see anyone until about 10:20am. The physician was very nice and didn’t have much to say since we’ve been on top of everything. I did bring up Hannah’s new fluttering tongue; I thought it was involuntary. It’s sporadic. The physician was concerned, but felt we should check in with a Neurologist. Great. 

During this consult, Hannah was tired and cranky with a cold - I knew she needed a nap. For the first time ever, she constantly reached for me and wanted to be held. Poor baby.

Closer to 11am, we moved to the large play room where I was asked questions by ST [speech therapy], PT [physical], OT [occupational], and a nutritionalist. I answered all their questions. They wanted to know if Hannah was always cranky with PT and thankfully the ST knows Hannah and could verify she was NOT herself; cried on her belly, cried on her knees, wouldn’t drink from her cup... it was frustrating and I just wanted to be done for Hannah’s sake.

The team felt we may need a swallow study to see if Hannah has anything preventing her from eating. She can sound phlegmy even when she doesn’t have a cold because it’s just sitting in her throat. 

“So who are you seeing with ENT?” Sigh. “No one. We haven’t had a reason.” What’s another appointment with a specialist, right??

We finally left and I felt deflated. I felt like we had been in a good groove... I dropped off Hannah by 1pm to finish my house work. I spent a good 45 minutes making more appointments [as well as for Ailo’s dental cleaning] and re-arranging double-booked therapies. 

A typical month of therapies/appointments.

I know it’s all for good and it won’t always be this way... it doesn’t help that she’s on her 3rd cold in about a month. 

We’ll manage!

Hannah’s Fluttering Tongue

Within the past two weeks, Hannah’s tongue has been sporadically fluttering. I hadn’t seen a connection to anything; hunger, sleepiness...

Until yesterday when I paid more attention and Tim and I thought - we think she may be doing it on her own - when she’s happy/content - ??

Nora’s tongue did it a bit when she was an infant ... it seemed to just be a reflex thing. Hoping it’s the same for Hannah.

*We did have a referral Tuesday from a Children’s physician to see a neurologist just to rule anything out. 

Hannah Updates

First, our sitter informed us she’s had Hannah up on her hands/knees for about 10-20 seconds a few times now! Was happy to hear this... I just feel like she’s really struggling with her arm strength. We all keep at it and I just thought maybe she’d be mobile by now... I’m hoping for some type of mobility at 18 months... we’ll see.

The bigger news is that Hannah just started drinking out of straw cups on her own! Woo hoo! I feel like this is a big step for her. Her eating is progressing, but just a bit... roasted potatoes are great - mushy with some thick texture and she actually swallows it. Fruit tends to not work - it just pops back out with her tongue.

Mmm Baby Mum-Mums! (She looks so old in this photo!)

One of the three speech therapists we’ve seen said she expects changes by 15 months - that’s the age when development starts to ramp up. Sigh. I hope there’s some truth to that.

Finally, we picked up the glasses this week! They have a band on the back to keep them on. Getting them on is a bit hard and Hannah gets mad - ! She does okay keeping them on for the two days we’ve used them. We think she can actually see better - she seems to be looking around more and intently. It’s interesting. We just hope it can help her left eye straighten out a bit!

Sitter Sighs

13 Months, Week 4

I don’t think I posted about Nora’s last day with her past sitter - picking her up on her last day was heart-wrenching. 

Even though it was less than a year, Nora loved her sitter and Holly loved her. They built a fantastic relationship. I wasn’t even there 2 minutes when I started crying trying to thank Holly for all her love and care for Nora. We were so lucky to have found her - what a caring, generous woman. 

Both her and I were blubbering messes... Holly was squeezing Nora goodbye and said “This is the hardest job in the world,” and I could feel her sadness. I’m having a hard time holding back tears just writing about it. 

It’s funny that I cried more leaving with Nora from her sitter than when I first dropped her off on her first day!

However I know Nora’s new sitter will be wonderful - her references just gushed about Carrie and she’s a very gentle and caring. It’s just hard putting your child through such an adjustment and hope they make that adjustment well. 

I cried a little bit when I left Carrie’s today, but thankfully she distracted Nora with toys, etc. so I could slide out. I wonder how she’s doing and if she’ll even be able to nap in this new place... having to adjust to 2 news homes for napping can be another challenge. 

Trying to stay strong...

Edit 4:50pm

Carrie kindly text messaged me around lunch:

“Hi Christine this is Carrie, I wanted to let you know Nora is doing great. She has been playing and laughing all morning and has eaten well here. She really likes my son Joe, he read her a few books and she followed him around until he went to school [sounds like Nora and Bobby!].

She fell asleep around 8am. Everyone wakes up at 8:30 around here. It was really quiet and I think she just took advantage. She woke up happy and excited to see the other children.”

So I was so relieved and thankful she sent that text - it made me feel more comfortable and better about the few tears I had this morning : ) 

One Year of Nora!

13 Months, Week 4

I cheated a bit, the 4th photo is really 13 months, but ya’ll can understand we were a bit busy...

Caregiver - Check!

13 Months, Week 2

Big weight off our shoulders. We interviewed 3 caregivers this weekend, each girl and her home had various pluses. Tim couldn’t even sleep last night because he was going through all the different attributes for each girl. 

At 7am this morning we had decided on someone as I walked out the door. By the time I got into work this morning at 7:52, we’d switched who we want Nora to be with! She’s a 26-yr old single Mom with two boys in school. She watches about 3-4 kids total, various times and overlapping. She’s about 2 miles from our house and only $5 more a day than we’re paying now. She’s extremely sweet and gentle, had really great referrals and just feel that she’ll truly care about Nora and watching over her. 

Big relief! 

Next weekend we’re packing up nearly everything else and have to find a washer/dryer. 

2 weeks left!

Nora’s Self Movie

13 Months, Week 1

Nora loves my phone as most toddlers do - she sees photos of herself and says “Baby!” She looooves pictures of babies. So I left her to take her own movie. Of herself.