In the last 5 years that I have celebrated my birthday as a mom, things have changed so much. I remember celebrating my first birthday after Tutu was born and she was still so tiny and we spent the day cuddling. Over the last few years my birthday has definitely become less relaxing but no less wonderful.
I have watched my children grow so much this last year. And especially the last few months. Tutu is back at school and dance. That alone keeps us busy, 5 half days in the afternoon plus 2 nights of dance. We did make the decision to keep Tutu in another year of preschool verses sending her to kindergarten. Her June birthday would have made her one of the youngest students and we felt she need more time to mature.
Tubie is also in school now. Everyone comes to our house to see her. So once a week she gets 30 minutes of PT, OT, ST and a teacher. She is loving all her therapists and her teacher. Some days are great and others she is a crab. But she is 3 so what more can we expect.
She is also mobile and pulling to a stand. Which is such a wonderful thing to watch. ￼￼￼
In general both girls are thriving and happy but we are still struggling hard with Tubie’s blood sugar. We had 2 inpatient stays that didn’t get us answers because to be able to run the tests she has to drop below 50. And she never did. I have a theory that it has something to do with the fact when she is at home she never stops moving and in the hospital that is not as much of an option. We are seeing a new endocrinologist this week on the advice of our current endocrinologist . At the same time we will be meeting with her genetics doctor. Hopefully they will have some ideas.
I am ending this blog post with all the fun things that we have been up to lately. Both girls are growing so fast but the leaps and bounds made by Tubie these last few months have blown me away!! When they say the days are long but the years are short, they are definitely not lying.
Also you may notice that Tubie is glasses free in these pictures. Someone has taken to removing her glasses and using her teeth to scratch them.
As our regular followers are aware we are visiting my mother in law in Orlando. This week my husband was able to be here for a few days. He won’t be back until the day before we go to the beach. 😭😭 He will be missed but the girls and I have plans for some fun stuff and friend visits while here.
While Daddy was here, we decided to take the girls to Disney. My first two stops were reaching out to my online resources to make this as easy as possible. I sent a bunch of questions over to Amy , she is an amazing and sweet travel agent that has been cheering Tubie on from day 1, we haven’t been able to meet in person but she and her girls have a love for travel and Disney. Then I went over to Tips for Special Needs at Disney. On Tuesday evening, I went online and purchased tickets. At the same time I reserved a place for lunch and set up FastPass+ for us.
On Wednesday morning we headed over to Disney World. Tutu was giddy and Tubie was along for the ride. Our first stop was getting to the Monorail. Since we had Tubies stroller that can’t be broken down easy and we were fairly close to security and the Monorail, we just walked in. Security took awhile but once we were through, we were able to go straight to the Monorail where the Magic and ease of this day began. As soon as we were seen, we were routed to a car with accessible access. I had called and spoke to guest services before we got there so knew I had to stop by Guest Services. But the Cast Member at the Monorail said to skip the one outside the park and head to the Main Street Chamber of Commerce. And this was great advice as we had no line.
I went in there and Tubie was issued a Disability Access Card(DAS). Tubies disability’s are very obvious but if you or a family member have issues that are not visible, you may have to answer extra questions. We also received a tag for the stroller that allowed her stroller to be used as a wheelchair. This meant that we could use her stroller(and bonus issue somehow the brake on her stroller broke while getting into the park. Basically terrible time) while waiting in lines, in shows, to meet the princesses and during lunch. For any rides that Tubie needed transferred onto the ride, a cast member moved our stroller to where we would exit so it was always waiting for us.
The magic put forward for Tutu was amazing. The look on her face when she first saw Cinderella’s Castle was worth so much.
The first ride we used the DAS was The Magic Carpet’s of Aladdin. It was so simple. I went and told the Cast Member what we needed and they scanned Tubie’s card and gave us a wait time. In the meantime instead of waiting in the hot sun, we were able to sit in an area with air conditioning and Tutu was able to convince daddy she was not only hungry but the only food that would help was ice cream. 🤣 When our time came, we were able to walk through the FastPass+ entrance and were on the ride after it ran once.
We also used the DAS for the Jungle Ride and Haunted Mansion. What was great is when we asked for locations to keep Tubie cool in the meantime, they directed us to shows. So we were able to watch the Country Bear Jamboree and Mickey’s PhilharMagic(FYI this is a must see. We absolutely LOVED it). This meant not only were we able to cool Tubie down, it kept both girls happy.
We also went on “It’s a Small World!” but this ride has it’s own special access. It you are choosing to ride this ride, you go in the exit. This took us down a wheelchair ramp and when there were enough people waiting to fill an entire boat, we were all loaded onto one boat to ride. It was about a 10 minute wait and it was nice to chat with the sweet mama and little boy behind us.
We also were able to get a reservation for a character lunch. We got to eat lunch with Winnie the Pooh and friends!! This lunch was right up Tutu’s alley. She got to eat a few bites and then dance around a bit. 🤣 Because this was a trip for her birthday, they brought out a cupcake and card just for her.
Something to know about the DAS pass is that it only works on rides the person with special needs can ride. So if Tubie didn’t meet the height requirements, we had to wait in line but did have the option for the parent swap. The only ride her height was an issue was Big Thunder Mountain Railroad. And since the only people who wanted to ride it were Tutu and me, it wasn’t really an issue. Grammy and Daddy hung out with Tubie so we could ride.
For the rest of the attractions we did we used FastPass+. The entire trip to Disney started with watching Pirates of the Caribbean. So we FastPass+ that and then met some princesses. We were able to bring Tubie’s stroller in for Enchanted Tales with Belle and to meet Tiana and Rapunzel. And in a terrible mom moment, I completely forgot to get any pictures with Rapunzel, the only princess Tutu requested 🤦🏻♀️ But they got amazing pictures done there and we will be ordering some for sure. If you are going to be there a few days, buy the PhotoPass. You will not regret it. Since we only saw a few princesses, I only plan to get one or two that Tutu asks for to remember her trip.
And because our luck is always awesome, we got stuck in a downpour and 🌪 warning! Unfortunately the girls and I were stuck in a very small gift shop. It was hot and miserable.
As you can imagine, Tubie only handles things for so long. So we were out of the park by 6:30. We were tired, burnt and everyone(adults included) were melting down. As a family we do better without being in big crowds. But overall we had an amazing day and everyone at Disney made sure it was a great and smooth trip.
“Vacation” with young children is still a lot of work. Add in everything it takes to bring a child with special needs to the store let alone to an entirely different city and plan on staying for a month.
I am so incredibly thankful and blessed to have family that lives in great destinations. My mom lives outside Pigeon Forge, TN. We try and visit her every summer for a couple weeks. And the girls and I enjoy it. My husband’s job really makes it hard for him to join us.
This year for spring break, my husband and Tutu went to Orlando to visit his mom. Tutu was begging to come back with Tubie and I before she even left. That is when the planning started.
The first step was to make phone calls to the medical supply companies. I needed to see if we could use a different address for a month. So I made arrangements to have Tubies feeding tube supplies, formula and growth hormones orders for June to be sent to my mother in laws house. We also have a Hello Bello diaper subscription that I had sent down. This was a huge thing and made our ability to travel “light” work. We now had all necessary medical supplies, food, growth hormones and diapers ready for us to arrive.
I then went through the girls summer clothes and if they needed anything that could wait until Florida(Tutu needed new sandals that couldn’t wait) it was ordered online and sent straight there. I also ordered a pack and play and sheets to be sent down for Tubies sleeping arrangements.
Because we are definitely going to the beach while here I shipped down Tubies pop up tent and purchased myself a new sun hat and Rainbow Sandals(these are my first pair and I am hoping they break in soon and are as great as people claim).
The final shipment went down in the form of a big box filled with bottles, med syringes, our clothes and toys for Tubie.
This meant that I just had to pack the suitcases with the stuff we needed until the last minute. So we arrived at the airport with 2 suitcases to check, the diaper bag, a cooler with liquid meds and backpacks with the things for the girls to do on the plane. A few days before we left, it became clear the the trip my husband had put on the trade board was not getting picked up and I was going to be doing the trip down alone.
Everything but the two suitcases fit under the stroller. Going through TSA was a bit of work but everyone was super helpful and it was pretty painless. We flew Southwest and everyone was amazing. From the gate agent who put us in the preboarding category (we were on the plane before they even started A boarding) and the flight attendants that got us settled and then helped us get off the plane. I seriously could not have asked for an easier trip. Tubie wasn’t feeling well and really wanted to sleep but couldn’t due to the angle of her car seat so there was a lot of fussing and some crying.
It took a lot of planning to get here and it was a bit stressful at times. But overall it went smooth and we are looking forward to a month without doctor or therapy appointments. And I am excited for the girls to get to spend time with Grammy.
We started the week with some worry. When Tubie woke up on Sunday morning her sugar was low. We decided to stay home from church just in case. It did yo-yo for most of the day but came up with just food so we avoid the hospital.
We did however make it to celebrate a friend’s bridal shower. I am sad we will be gone for her wedding but was happy to share in a small part of her day! And it wore Tubie out. The random nap did have me a bit worried she was still fighting something.
Monday was less eventful. Tubie and I had OMM appointments and Tutu had recital rehearsal.
On Tuesday we went to the zoo with Michelle and kids from My Life Untied. If you are not following her and her adorable kiddos, do so now!!
After the zoo Tutu had her final rehearsal for ballet.
Wednesday Tubie had a therapy evaluation(she has to do this to do new goals a few times a year) and she was not into it at all. 🤣 Poor thing was off her game.
Then came the big night. Tutu’s first ballet recital. If you have never watch tiny ballet dancers on stage, I recommend you do this at some point in your life because it is too cute for words.
Thursday we played outside and I was completely amazed when Tubie got in the pool and not only didn’t cry but actually played. Every other time I have tried a pool in her almost 3 years of life has failed. It was a small kiddie pool but I have hope for the summer.
Our day in the sun was followed by Acro Rehearsal for her Friday night recital. She insisted on cartwheeling 🤸♀️ all the way to the car. I swear getting this child to just walk sometimes is more work then trying to convince to just take a step.
Friday involved a trip to the gym(I am currently in love with spin class) and a quick trip to the grocery store.
But the highlight of the night was Tutu’s Acro Recital! She did so well and was super cute. And I am not going to lie and say that number will not forever in our minds be remembered as the one the Tutu did the potty dance the entire time. But for being a 4 year old who had to go to the bathroom but had to wait, she nailed it and was super adorable!!
And that is our week. It was fun and long and kinda exhausting. I am glad it is over but made some great memories.
Hey everyone we are back!! I have a goal of posting a lot more and just in time for summer adventures!! But first a quick catch up. Some good, some bad and some amazing!!
First, my last post included issues with Tubie’s gtube site. I am happy to say that the new button and a compounded ulcer medication has made all the difference. No issues in months!!
Let’s start with Christmas. I have no pictures from Christmas morning because Tubie was admitted on December 20th and didn’t come home until the 26th. She had norovirus that she shared with the family. While in the hospital she picked up RSV.
Moving on to 2019 we had some big moments. Tutu had her first sleep over!! She had a blast and wants to have more. She stayed with a sweet friend while Tubie had a follow up MRI. Her tumor is staying stable and we only need them every 6 months now!
Tubie received her TinySuperheros cape. This is an amazing group that is providing capes to the smallest superheroes in the world. They work off donations to make sure every child who deserves a cape gets one.
Next one the list is my mistake. In a moment of exhaustion and getting the girls ready for bed, Tubie received one of her meds twice. This got us a night in the hospital for observation. She was fine but they needed to watch her heart rate.
Tubie was in a local campaign for the Board of Developmental Disabilities. She did awesome especially since we went to the pediatrician after and she had a double ear infection.
She is also on a few billboards in town.
Next are a bunch of pictures of the last few months. I thought they were cute so sharing.
While Tutu and Daddy went to visit Grammy in Florida, Tubie was back in the hospital with another stomach bug. Her blood sugar just can’t handle them. But this time we had to get creative because TUBIE IS MOBILE. She moves in her own way that is not quite a crawl but she is all over the place.
Some fun stuff going on with Tutu! She is prepping for her first dance recital. She has two dances. Ballet and Acro. I can’t wait to see how cute she looks on stage. She also is done with school for the summer. The school year flew on by. She will be going to preschool again next year for a few reasons but mostly it will be the best fit for her.
And the big things going on with Tubie. We found a formula she will take orally. She is taking half her calories by mouth!
Also she has finally decided to give standing a try. The last few weeks she has started pulling up and standing with help. She still hasn’t mastered the couch but she stares at it trying to figure out her best course of action.
And that catches everyone up to this point. We have a great summer planned and I am hoping to get on here often to post.
A lot has happened recently, I am going to catch you up on everything Tubie and hopefully later this week find time to catch you up on Tutu. In September, Tubie got more tubes. This time in her ears. She was seen in August with hearing loss and in September, ENT went in and found her ears pretty plugged up. After cleaning out her ears and putting in tubes, she had almost perfect hearing!!!
About 3 weeks ago, Tubie started crying almost anytime her tube was touched. After a quick call to her complex care pediatrician, I took her to urgent care.
The doctor at urgent care was very unhelpful. I don’t think it helped that we had to sit there for over 3 hours and Tubie was falling asleep. Luckily we had a GI appointment that week. Her GI doctor thought she had an ulcer in the stoma (gtube track) so we started treating it with medication to help. A week later and there was no improvement. We changed her to a longer button. And gave it another week.
After a week with a new tube size and treating her 2-5 times a day, she was still in pain. We went back and made the decision to do a scope. While waiting for the scope we had some fun with Tutu and went on a field trip. Where they had a handicap accessible wagon and Tubie got to enjoy herself.
Bright and early the next morning(ok it was just early, the sun definitely was not up) we were at the hospital for her scope.
The doctor came out after she was done and she has a bad ulcer in the stoma track. It is full of puss and very red. The doctor does not know why the medication we had been using hadn’t worked yet.
Being the amazing doctor he is, he had us continue doing what we were doing to try and help some while he worked on a better plan. It has been a week and he has been in touch every weekday trying to figure out the best course of action. Not wanting to do something that could cause more harm then good. In the meantime, we switched Tubie’s button type from a Mic-key to a Mini. This button has a different ballon shape, is lighter and has a lower profile. While it won’t help with the current ulcer, I think overall it will be a better fit for her.
Today I realized how much all of this sucks. Tubie is in a lot of pain. And it makes me want to cry and the worst part is the only way we have at this moment to try and make it even a little better is to hold her down(Tutu is way better at helping then any 4 year old should be) or basically tie her down(I don’t always have help) in order to do what is best. I know while it hurt she is more pissed off she can’t stop me from holding her down to do it. I know that even if she doesn’t actually understand, I am doing what is best. But I also know that sometimes this life just sucks.
I am going to end this blog on a positive note though. Look at Tubie sitting in the shopping cart. 💓💜💓💜 She was so excited she kept shaking her head so getting a good picture was impossible.
This week I needed to go into Hobby Lobby for one thing. It should have been fairly easy. Tubie was hot so I chose the GoTo seat over wearing her. Since I just needed one thing and it was too big for her stroller basket, we needed to use a cart. I love craft store shopping and have nothing against the store. I love my GoTo seat because it allows Tubie to shop with us. However due to the size of the carts, it was a total failure. By the time we left, I was stressed, Tubie was crying and Tutu was upset because I was just trying to get her moving through the parking lot. There is something everyone can do to try and help. First, we are blessed to have a GoTo Seat. It is not possible for all families. Second, sometimes as special needs moms, we just need to get a few things and don’t want to take equipment out to get it. So if you can take a copy of this pamphlet for the GoTo Shop and share it with all your stores. Let them know how much it will help families like ours. The Caroline Carts are amazing but designed for bigger children. The age requirement is 48 months and I am not even sure Tutu would fit at that age. So if you can please share with all your stores and also with all your friends. The more companies see the need. The more likely it will happen!!
What she looked like by the end of our shopping trip.
This week Tutu started preschool. This in and of itself is a huge milestone. But it was very bittersweet for me. While I am extremely proud of her, this was never apart of our plan.
Before we started planning our family, really before we were even engaged, we planned to homeschool our children. I wanted them at home with me. I did so much research and was so excited for homeschooling. Then Tubie came along and time to homeschool wasn’t there. I wasn’t getting one on one time with Tutu who was craving learning more things and with Tubie’s therapy and appointments putting Tutu in school only made sense. Once again our plan has shifted(you seeing my new life motto yet) and things have definitely change. Tutu is loving school and her teachers truly care about her. We currently have a plan for the future as far as schooling goes but let’s face it, nothing ever goes as planed.
When I got pregnant with Tubie, there was no question as to how she would be fed. Tutu was still nursing and continued to nurse up until a few hours before Tubie was born. When she was born and I woke up, we tried nursing right away. And at first she did really well.
When she was transferred to the NICU she struggled to latch. We both were struggling. My milk was coming in and she was pretty tired from all the testing that had been going on. We were trying to avoid a bottle right away and put in an NG Tube to see it some food in her belly would help her relax a bit. And it helped some. She finally nursed after 12 hours of refusing.
Then she stopped. There was no LC available on the weekend so after talking with the nurse, her doctor and my personal IBCLC, we decided to try a bottle. We mostly wanted to see if she would suck because at that point she was refusing my breast and a pacifier(given during transport to the hospital). She took the bottle great. We knew she could suck. So I started pumping like crazy and we started bottle feeding her.
The rest of her NICU stay was bottle feeding, pumping, her direct nursing two times a day and Tutu coming up and nursing once a day. My milk came in pretty fast so I was providing all of her nutrition.
After we got home we went to just nursing her but she started to lose weight again. We tried a few things starting with bottle feeding and at one point trying to fortify my milk with formula(my doctor tried to get us human milk fortifier but it could not be found). She threw up after any feed with any formula. We went back to just breastmilk bottles and she slowly gained some weight. Eventually she was clear for just nursing. We nursed for about 6 weeks when she stopped gaining again. This time however she refused a bottle. An Early Intervention feeding therapist came to the house and we couldn’t get her to take it. At that point she was well hydrated so we just kept nursing.
When she was 3 months old, she started having issues staying latched and that was when she screamed to even nurse. And when she did nurse it was enough to stop the hunger pains. We were admitted through the ER and after 9 days in the hospital she got an NG tube. We were discharged with the NG tube. She was getting 3oz of breastmilk through her tube every 3 hours around the clock. I wasn’t sleeping at all. We eventually switched to continuous feeds overnight so I could sleep some.
At some point during this time, Tutu stopped nursing. I don’t remember exactly when, I just remember, one day her not nursing anymore. She was around 2.5 years old.
She got her gtube at 5 months old when it became obvious that she was thriving with a feeding tube. She gained weight and was holding her head up better. Not having to work for her nutrition was what she needed. In addition the NG tube created an oral aversion so she refused to eat.
After her heart surgery, her dietitian and I sat down and had a talk. I was physically and mentally exhausted. With breastmilk in her feeds overnight, I had to get up every two hours to get more milk because it couldn’t sit out that long. I couldn’t pump enough in one session to make it safe to be out all night so we made the decision to use formula at night as long as we could find one that worked for her. We went straight to the most broken down formula. She kept it down but she was in horrible gas pain. So we backed off for a bit. Then the dietitian said she had luck with a different brand. Tubie did well on it. So we went to breastmilk all day and formula at night. She was still getting about 60% of her nutrition from breastmilk but my mental health improved so much and I was able to better care for her.
Sometime in May I realized we had enough breastmilk to get her to a year and I slowly stopped pumping.
After her first birthday, Tubie started a blended diet. That is just real food through her feeding tube. Currently we use a pouch of Real Food Blends and add some extras to give her more carbs.
I currently make 2 days worth of food at a time. To the pouches I add 1 cup of old fashioned oats, 1/2 cup of my homemade Greek Yogurt, 24 oz of whey(this is what strains off the yogurt and is full of carbs), 2 vitamins and 1/4 cup of honey. I do change things up sometimes using a banana instead of honey and almond milk instead of whey. To the last feed of the night she also gets 1 tablespoon of cornstarch to helps with her carbs over night. She get between 750 and 800 calories a day.
If Tubie gets too many calories she can become overweight easy. Because of her Noonan Syndrome she will be short stature and isn’t mobile yet. So we limit her to a healthy amount of calories that does not risk her weight. But we discovered after the growth hormones started she wanted more volume. So we supplement her volume with pedialyte. This keeps her weight healthy (although she is under weight for her age her weight to height is perfect) and full. We are working on getting her to eat orally.
While feeding Tubie definitely didn’t go as planned, it is what I know now. It has become a part of my daily life and it is a lot easier then I ever imagined.