No More Helmet!

Rex had a helmet appointment last week down in Pleasant Grove, so we spent the morning at my grandparent's house. They just put their house on the market today and I am feeling happy for them and sad for myself. I love having them just an hour away from us and I love that Rex and Ellie have really had the opportunity to know their great grandparents. We lived with them for a month this summer. I love being around them. So today we went down to spend the day with them again, even though we didn't have an appointment!

We didn't have an appointment because Rex got his helmet off last week. We tried to get him to keep wearing it at night for 3 more weeks to try and protect that little round head we have worked so hard for. However tonight when we went to put it on his head its pretty clear that he has just grown out of it. He is too big for it. The last picture shows the change in his head shape over four months, May 2018-August 2018. I think he is enjoying being done with it! And his hair is seriously to die for.

Ellie has started pulling up on furniture, in her crib, on our legs....basically anywhere she can. She has been really clingy and just wants to be in on the action no matter what is going on. She has actually been a little difficult with feeding lately. She stuffs food in her mouth and gags until she throws up. Her in home OT was here this week and we have a few new ideas to try out to help.

Rex was back at feeding therapy this week and I was able to have the therapist walk me through some things that have made me anxious with feeding. It seems like in the last few days he has shown more interest in oral eating! He had five bites of yogurt this morning at breakfast and half a ritz cracker at lunch! At dinner he didn't want the noodles we were working with, but he was happy to lick a piece of roasted broccoli off my plate. He was sick all last week and his vomiting really increased. He was vomiting 2-3 times a day. Hopefully that's over for the most part and his new dose of meds will do the trick to keep that vomit under control.

Charlie is working on his anatomy course online at night and working at the dermatology clinic during the day. He is busy. Whenever he comes home both babies get so excited to see him and when he goes in our bedroom to study at night we have to barricade the door because Ellie just wants to go sit with him.

Charlie and I celebrated our fifth anniversary last weekend. We got away for two nights and it was amazing. I don't remember what it was like to not have all the responsibility the twins bring. I slept til 10:40 one morning! I didn't take many pictures of our getaway, but we mountain biked, hot tubbed, slept, watched TV and ate good food. It was the best. The twins had a great time with Grandma Whitworth but were still so excited to see us when we got home.

Summer Hikes

 We got these awesome osprey baby backpacks and basically have been taking every free minute this summer to hike. Seriously, the end of July and beginning of August we went on at least one hike a week! I need to write another medical update, because things have been happening and changing. But if there is one thing I've learned so far it's this: Every time we go to a specialist or therapist I basically tell them the story of the last 3-4 months, then answer any questions they have. I go through medical history and recent developments constantly. Sometimes I'm just done talking about it. So I am going to tell you about our summer hiking, because this is something that Charlie and I loved to do before the twins, and now here we are doing it with the twins. You should see some of the looks and hear some of the comments we get on the trail. Yes we are a little crazy.

Twin’s First Island Park Trip

A little different this time around, but your probably used to reading what I type out. Here is our first trip to Island Park with the twins!

Adapting

Today we spent the day at Primary Children's Hospital. Both babies had NICU follow up visits and Rex had his first appointment with his new GI doctor (who we loved).

I'm exhausted from today and so are the kids and grandma too! But I want to write some of my feelings because these things are big things that we are working through and big things that we are facing. We thought today that Rex would receive the diagnosis for the type of CP that he has. But we didn't. And that's ok because it doesn't really matter what type he has. It's hard to tell and he could still improve somewhat. All the type is is words on paper. =

What did happen today was that we tried out some different types of adaptive seating and got a better idea of what Rex's mobility could be like years down the road. I thought that I would feel sad or mad about looking into assistive technology and adaptive devices, because if we are needing those things it means that our son truly has a disability. It becomes somewhat real. I know that might sound silly but I was a little afraid of that.

The PT brought in some different seats for us to try, and something different happened. I felt ok about it. I felt excited for Rex that there are these things that he can use to help him experience and live life to it's fullest. Like recently I have taken both kids to Costco with me. Ellie loves sitting in the shopping cart, but I can't sit rex up there by her, he would just fall over. Today we tried out an adaptive seat that you can strap into a shopping cart, a park swing, or a seat at a restaurant so that he really could do all those normal things. I got a little excited about it.

We also looked at an adaptive bath chair so he could sit up in the tub. You can even take this bath chair to the pool or in the backyard with the sprinkler. I got a little excited about it.

And finally we got a referral and recommendation for Rex to get a powered baby car. Yup a powered baby car. At around 9-12 months a typical baby would be starting to crawl and move around independently. We know that that won't happen for Rex in the same timeline, so there is this foundation that takes powered toy cars and adapts them for little babies! Like as little as eight months. That way Rex can still experience moving around where he wants to go. But I am cracking up at the thought of our baby driving a little plastic truck.

All of these pieces of equipment mean that we do have a child with a disability. Life is a little more complicated and takes a little more planning. But as we walked out of the clinic today I couldn't help but feel gratitude that there are options like this. Because without them Rex would not be able to develop social skills and language skills. I'm grateful that his disability will only last for this life. It will teach us and it will stretch us, and then it will be gone. He will be perfect and he will be ours forever.

And our house will be filled with some extra equipment. Maybe the reason I'm actually feeling ok about it is that we just moved to a bigger apartment. Who knows.

Life Changes

Rex and his Great Grandpa 

Shout out to the World's Best Aunt who came and watched the twins so I could pack up all our stuff

Rex was not happy about trying to take some birthday pics

If you look close you can see one of his teeth poking through! 

Spending four months in the NICU watching our babies fight for their lives gave Charlie and I a lot of time to think and we learned a lot too. During this time Charlie decided that he wanted to become a physicians assistant. So here we are, our babies turn one in two weeks, Charlie is headed back to school and just changed jobs, and we are living at my grandparents while all our stuff is stored at Charlie's parents house. It's just short term, but man it feels crazy right now. We found a new apartment closer to Charlie's new job and school, but it won't be ready until just after the babies birthday.

In the last week we have really had some amazing things happen. The biggest is Rex learning how to roll from his tummy to his back! We were in my grandparents living room and I was just trying to get them both some time on their tummies. I had Rex on his and was helping put his arms up to push up and lift his head and he was being so wiggly. It took him a good 10 seconds to make it all the way over to his back and I was dancing around like a crazy lady! Things like this may seem insignificant, but what you have a child with special needs things like this are huge. Both Charlie and were so proud, and when Charlie got home we made Rex do it about 10 more times. I can't wait to take him to physical therapy this week and see what his therapist says!

Rex also has two little baby teeth now! He has been a bit cranky about it but it has really helped with feeding therapy. To date Rex has tried a strawberry, apple, carrot, celery, and banana. The banana is not his favorite, but he loves strawberries. A couple of times we have tried to get a little baby puree in his mouth, but the texture is still really hard for him to process. We have feeding therapy again tomorrow and I'm really excited.

Rex got into a new clinic up at Primary Children's hospital called the Comprehensive Care clinic. We have been having a really hard time with vomiting up his tube feeds. Last month he lost two ounces because he just couldn't keep his calories down. His GI was not very helpful with the whole issue, but our pediatrician knew where to send us. The great thing about this clinic (unlike other specialities such as GI) is that they go over every system, and look at the child as a whole instead of looking at one specific thing. His comprehensive care doctor believes that because of his cerebral palsy the muscles in his abdomen are tighter than a typical kid, which would make it hard for his stomach to empty which could be causing all the vomiting. So we started him on a new med called cyproheptadine to help with gastric emptying and we mix a little rice cereal in his milk to make it stick and stay down a little better. He hasn't thrown up in TWO WEEKS. Seriously this is huge for him. And I believe it has been helping him be more willing to do more  feeding therapy. HUGE WIN.  Needless to say we love comprehensive care and Dr. Alvey.

I promise I will get to Ellie in a minute ;)

Rex also got some new head gear. His flat spot on the side of his head went away with repositioning and physical therapy, but because he isn't as mobile he developed a pretty flat back of the head. So he now has a cranial helmet to help reshape his cute little head. The first week was pretty rough, we had to get a couple of adjustments because it was rubbing his head and creating sores, and he didn't love wearing it. Now he is pretty used to it, he has had it for three weeks and we already have seen improvement in his head shape. And Great Grandpa got him some BYU (the college daddy and I went to) stickers to go on his helmet.

Ellie has been learning new tricks lately. Her favorite thing to do is growl, at strangers, at toys, and at us. Her OT wants us to work on mimicking with her. So for example we pat a stuffed animal and then she does. She is getting better, and her new favorite thing to mimic is shaking her head no. It's hilarious! She also learned how to pick up the little baby crackers and put them in her mouth herself. This is a lifesaver at church! Set her down on a little blanket with some baby crackers and she entertains herself for a solid 45 minutes.

Speaking of church last week was a doozy. We took the twins to church with Charlie's parents at 9 am and Rex has a feed at 9:30 am. Everything started out fine, but by the end of the first hour we were all out in the hallway and Rex's tube feed had soaked the front of my dress because the little med port popped open on his extension. You live and you learn.

Back to Feeding Therapy

This week we only had one appointment scheduled. AND if we gain enough weight at that appointment we don't have to see the pediatrician for a month. A whole month. In some ways I think God knew that I was going to need a busy schedule with babies for my own sanity, I thrive on places to go and things to do. This week has been strangely empty. But next week will make up for it, we have four appointments in five days. 

We have just been hanging around the house, trying new recipes, and pretending like the twins have a routine and schedule. I say pretending because we usually don't have a normal routine and schedule due to different appointment times everyday. 

Eleanor is teething and has been rather fussy. Her fontanelle (soft spot) also feels more full than normal. I ended up taking her to the pediatrician spur of the moment last week to get it checked out, and everything looks fine. She loves chomping on apple slices, carrots, and our fingers. We started doing solid foods with her, but she mostly just spits them out. She loves the social interaction, the flavors, and holding the spoon herself. 

After going back and forth on the right therapist to work on feeding with Rex, we took him back to our outpatient pediatric rehab center today. His occupational therapist has been doing an amazing job helping him work past his oral aversion, but both Charlie and I now feel like he is at a point where he needs more frequent and specific interventions. So tonight at feeding therapy he got to sit in a big boy high chair for the first time. We have changed our goals for therapy from taking a bottle, to having positive oral experiences using tastes and tools. The next few days Amazon boxes are going to fill our doorstep because I ordered a head shaping pillow, a high chair that reclines, feeding tools called num num dippers, and a few cooking tools. 

At our first session of therapy we worked on desensitizing his gag reflex using the num num dippers. He did better than I expected, he only gagged once and didn't throw up at all! Then his therapist sprayed watermelon flavored shaved ice syrup on his dipper and let him try that. He was so cute and even did a couple little lip smacks after he got a taste of it. I am so proud of him, and I am cautiously optimistic about being back in therapy. 

The Twins' First Easter

Sitting on Grandma's big chair

This is how Rex felt about the car ride

Taking a break 

Watching the Easter Egg hunt with Grandma

Going for a windy Idaho walk

Ellie enjoying Easter dinner

We decided to take our first trip since the babies came home in October, a four hour drive to my paren's house in Idaho. The way there they did well, and slept most of the time. On the way there we made a pit stop in Salt Lake City to see Rex's surgeon for a follow up at Primary Children's Hospital. The way home was a totally different story, Ellie screamed half the time no matter what we did, but she was happy when we would stop and take a break out of her carseat. 

We loved watching LDS General Conference, eating yummy food, and playing games until all hours of the night. The babies even did pretty good sleeping in a new place. We set up two pack and plays in the room Charlie and I usually sleep in. We even remembered Rex's crib wedge so he could sleep on an incline and get his feeds in the middle of the night. Traveling with kids is so different from our carefree days of packing up and leaving all with in an hour. But we were able to fit everything in our Ford and barely see out the back.