Glasses

Madison finally got her glasses today. It took almost 3 weeks from the time we went to the eye doctor for them to come in. We went to Vanderbilt to the eye doctor, but the glasses store didn't take our insurance. So I took Madi to my eye doctor in Portland. They didn't have many frames in her size, so they ordered some in for her to try on. That took about week to get those in. Then we picked out her frames, and it took almost two and a half weeks for the final frames to come in. She has a pretty strong prescription (+5), so they did a special lens where they wouldn't look really thick.

I am pretty happy with the way they look! I think she looks pretty adorable...

Instead of having a strap that goes around her head, we got the glasses that wrap around her ears. They are supposed to help keep them on better, but she can get them off pretty easily.

She kept wanting to look at herself in the mirror at the eye doctor when she put her glasses on. She didn't pull them off immediately either, so they said that's a good sign she is really seeing better. This afternoon she did good with leaving them on, but tonight has been a different story. She has pulled them off every few minutes. Hopefully it will just take her a couple of days to get adjusted & then she will leave them alone.

I'm excited to see if they make a big different in her walking / balance & being able to identify things!

15 Month Checkup

Madison had her 15 Month Checkup today. It went good for the most part! She's growing like a weed... 23 lbs 3oz (75%), 31 and a half inches long (79%), and her head was 18 inches (50%).

It took a while to go through all of Madison's doctor visits & things that have gone on in the last couple of months, but the only new appointment coming out of this checkup is going to see an orthopedic doctor. Madison's spine curves some & her chest bone sticks out pretty far, so we are going to get those things checked out. We go to that doctor the end of October.

She also has had feeding & speech evaluations. Based on those evaluations, they want her to do feeding therapy every other week & speech therapy once a week.

For feeding, she needs some help with chewing her food before swallowing. Right now we're still having to give her pureed foods with every meal & then soft solids. She gets choked easily on firmer or harder foods because she's just trying to swallow them whole. She also is tongue-tied, so they think that could be limiting her tongue movement. (So we may be getting her tongue clipped in the next few months).

For speech, she had a mild to moderate delay in expressive & receptive language. Basically the biggest things she was behind on are words (she only says 3 or 4 & doesn't have a lot of different sounds) & following commands. (I think part of that is my fault because I am with her all the time and know what she wants or needs. She doesn't really have to ask for anything).

We are still waiting to get her glasses. They were supposed to be in today, but the eye doctor said it will probably be early next week before they are in.

I know there are some things that she is going to be behind on due to some of her medical problems & hospital stays, but after her evaluations and checkup today I've been feeling a little down. I'm afraid that she would be doing better learning-wise in a daycare or where she's with other kids. (But I know medically the best thing for her is to be home with me right now). Today on the 16-month checklist at the doctor's office she wasn't doing probably half of the things on the list. Some of the questions they asked me on things she was doing, I hadn't even thought to let her try that yet. I guess I just need to look more at the milestones & work on specific things from that list every day.

Some of the things she wasn't doing yet that I can think of off the top of my head were:
-Does she climb up on things? (Umm no, she just started walking pretty good by herself)
-If you ask her to get an item from another room will she go get it?
-Does she get your attention or ask for help in some way if she wants something?
-Does she sing along with songs? (Nope but she'll dance)
-Does she play peekaboo? (Nope only patty-cake)
-Can she put a small object in a clear bottle? (Never thought about doing that)
-Can she brush her hair? (Well she wears a helmet all the time, so never thought about letting her try that)

I just feel like there's a lot of things that never even crossed my mind, and it makes me feel like I should have known or had an idea what to do.

She had to get several vaccines today & we got her flu shot, so she'll probably be feeling pretty puny the next couple of days.

Insanity - Week 1

Jake & I finished week 1 of Insanity yesterday. The workouts were tough, but the worst one by far was Pure Cardio. It was awful!! We have to do it again tomorrow, so I'm hoping to not have to take as many breaks (even though I'm sure there will still be quite a few).

Along with doing the workout plan, we're counting calories. I'm trying to eat about 1500 calories a day. The week went good until Saturday night & lunch Sunday. Saturday night we went to a friend's wedding shower, and they had Mexican food (my absolute favorite), so I had to eat some tacos & chips. Then Sunday, we ate lunch for my dad & brother's birthdays. All in all I was pretty proud of myself for the week & lost almost 3 pounds (my goal while doing Insanity is to lose 2 pounds a week).

After we get through this week we will have another Fit Test & check our measurements next Monday. Eight more weeks to go!

Insanity

Jake & I have both been wanting to lose some weight & get back in better shape for a while now. We are going to start Insanity Monday. I've done a few of the videos before & know that it's going to be a tough 60 days! I'm hoping by doing it together we can stick to it. The harder thing for us though will be eating better - our biggest issue is definitely portion sizes (and snacking for me). Being home with Madison has not been good for my eating habits. I don't eat out as often, but the kitchen is just a few steps away. I eat when I'm stressed - so the past year has not helped in that aspect!

When we decided we were going to try to have a baby, I lost almost 30 pounds... I was eating 1200 - 1500 calories a day & doing a lot of workout classes at a gym in Bowling Green. I was the weight I was when I was playing college volleyball. Then I gained 40 pounds total when I was pregnant with Madison. When she was two weeks old I had lost about 25 pounds, but I have been stuck there ever since. I still need to lose about 15 pounds to be where I was pre-pregnancy. So my goal with Insanity will be to lost at least that 15 pounds (the more the merrier though)!

If you've done Insanity, any tips or things learned would be greatly appreciated, especially if you had success with a certain type of eating plan.

Sensory Bag

I've seen a lot of things on Pinterest about sensory play for kids. One thing I saw on several sites was a sensory bag kids can play with. I thought making one would be good for Madison because she needs to work on touching different kinds of textures. She doesn't like some slimy, bumpy, and rough textures (like some slimy food, toys with raised bumps on them, and grass).

Here is the bag I made...

I took a freezer Ziploc bag & added a mixture of hair gel and water to it. Then I added some things that I found at the dollar store:  "googly" eyes, beads, erasers, squishy balls, dinosaurs. Then I used duct tape to seal a couple of the edges to help prevent any leaking.

Madison didn't play with it a whole lot this morning, but maybe she'll at least pick it up some to see what it feels like.

 I also picked her up a couple of toys that are a little slimy & have a bumpy texture to them as well. She wouldn't touch them at all this morning, but hopefully we can work on that too. She's getting better with slimy foods - last night she played in some spaghetti & actually picked it up and put it in her mouth.

I'll take the baby steps :)

Madison's Diagnosis

I have been wanting to write this post for a while now, but just haven't been ready to share what Madison's diagnosis is. She has a genetic abnormality, and when we first found out about it when she was in the NICU, I was very upset about it. We didn't tell anyone except close family. I have told a few people about it since then if it has come up in conversation, and some of you may have assumed something based on all the issues she has had. I was just so afraid that she would be treated differently if everyone knew, but the truth is, she is treated differently just based on everything that has happened in the past 14 months.

She has 16q22.3-16q24.3 duplication with attachment to a derivative chromosome 7. What does this mean? We have no idea. Vanderbilt has no exact match for this mutation for anyone else in their system. (So don't try to Google it because you won't find anything that is relevant). Our geneticist made sure to make that clear to us when he first evaluated Madison.

The only things we know for sure are that this mutation caused her to only have one kidney, and she has a 50% chance of passing on this mutation to her children. I also have some suspicions that her sleep apnea, respiratory issues, and slight development delays could be attributed to this. However, we have no way of really knowing that for sure. Jake & I both had our genes tested, and ours were normal. So any future children for us shouldn't really have a chance for this mutation.

Her prognosis from the geneticist we see is really good. He doesn't expect her to have major issues that he can foresee right now. However, the scary thing for me is we just have to wait and see what may or may not happen. She has done pretty well so far considering everything she's been through, so I'm just hoping that things continue to improve for her.

If anyone has questions, feel free to ask. I just felt like it was time to not be afraid to let people know the underlying issue that we haven't really talked about much. I'm comfortable with it now & know that she really is one of a kind :)

Lots of Appointments!

This week has been really busy so far. We had 4 doctor's appointments between yesterday & today. Between the 2 days, we also have added 3 new doctors / specialists we have to go see in the next month.

Madison's pediatrician referred us to an eye doctor at Vanderbilt to get her eyes checked out. One of her eyes always runs, so I'm afraid she has a clogged tear duct that she never grew out of. We also are going to have her vision checked.

Then today she had another swallow study done. She never has had a clear chest x-ray so they are thinking she may be aspirating some. The study showed that she did aspirate some, so we are going to have a feeding evaluation next week & probably will be going to a specialist for feeding therapy after the evaluation.

She's also going for a speech evaluation towards the end of September.

Lots & lots going on :)

On a side note, she took a few steps by herself yesterday! She's getting closer and closer to walking! It cracks me up because she knows she did something too & she gets so excited! Love my sweet little princess to pieces!!