Sunday, June 29, 2014

Evaluation

Ty Man is 17 months old now. Wow! Last Friday he had an evaluation with Sooner Start to see if he qualifies for therapy services. Ty's neurologist had concerns about his gross motor skills and speech, so I wasn't surprised that he qualified for therapy based on low scores in both of those categories. At this point Ty should be able to walk at least ten feet, but he just took his first steps less than two weeks ago. He is also not climbing much yet, but I don't think that's such a bad thing.

In regards to his speech delay, Ty is behind in both his expressive and receptive communication. I already knew this, but it wasn't until the evaluation that I became fully aware of the things he isn't doing. For someone who isn't saying much, he sure likes to make a lot of noise! Something tells me that once he catches up he'll be just as chatty as Big Sis. In the meantime I was highly encouraged to try teaching him more sign language.

There were several areas in which Ty is on par with other children his age. His social skills are right on track, for example. He scored highest on his fine motor skills and attention & memory. I could have already guessed that his highest score would be his fine motor skills since he has always been very "hands on", but I was pleasantly surprised to hear that some of his skills are on a three-year-old level. Awesome!

As part of the evaluation, Ty underwent another hearing test. He passed, but they discovered water in his ears again so they suggested I take him to his pediatrician. I was able to get an appointment that afternoon, and sure enough he has an ear infection. He had fluid in his ears when they were last tested in February, so his doctor is keeping a close watch on them now. He'll have another hearing test next month, and if he has fluid again he may be seeing an ENT. For now we will give him antibiotics, and we will start therapy after the 4th of July.

At the end of the day, I am still so proud of how Ty did. First of all, the evaluation took quite a while and was in a small room, but Ty was happy and playful for the therapists. I'm also proud of him for the areas in which he excelled. He has overcome so much, and I am still amazed at his current mental and physical condition. I'm grateful for some good advice I received from the therapists, and I'm anxious to get started with therapy. In my opinion, even if his delays aren't severe, therapy certainly won't hurt. I have no doubt he'll be caught up in no time.

By the way, I am still trying to decide when he started looking like a little boy instead of a baby. Can anyone explain to me how that happened so fast?

Thursday, May 22, 2014

Just Keep Swimming

I am so thankful that Ty's appointments are much less frequent than they used to be, but it still surprises me how quickly they seem to come around. I hope you are sitting down for this one, because we knocked out two big appointments this week, and I have a lot to share.

First Ty visited his neurologist, who he last saw six months ago. A lot changes in six months! Ty weighed in at 20 pounds and is 30 inches tall, which puts him back in the 5th and 8th percentile, respectively. The neurologist was happy to see how he has progressed, but she did have a couple of concerns. Ty is 16 months old and not walking yet, and although many healthy children aren't walking by now either, she just wants to be on the safe side and get him into physical therapy. 

The other concern she had was Ty's speech, which didn't surprise me. Ty is constantly jabbering and makes a wide variety of sounds, but he only says 5 or 6 words. The neurologist doesn't want us to be overly concerned right now, but if Ty's language development doesn't progress enough in the next few months she's going to test his hearing. He has already passed a few hearing tests in the past, but those were only to test if he can hear. She wants to make sure that he can hear clearly

I really like our neurologist, and she seems to care a lot about Ty. She has explained to me that it's very difficult to know what exactly we may or may not face during Ty's development because of the brain injury he suffered. It's so unpredictable. There is always the possibility of running into learning problems, delays, or even behavioral problems along the way, but we may also never have any serious issues. That's why I am not overly worried about anything right now. I think she just wants us to be aware of the possibilities and to be taking preventative measures. 

After visiting the neurologist I took Ty to the lab to have blood drawn for tests. The techs remarked on how much Ty had grown, and they practically squealed when they saw the size of the vein on the inside of his arm. They usually have such a difficult time working with Ty's little veins, but apparently his growth spurt paid off. He was still unappy about being poked, and we had six (6!) vials to fill this time, but it was over with so much faster than usual. Hooray for good veins!

Today Ty saw his nephrologist to discuss his lab results. Since his last appointment his creatinine has only decreased a little, but that number is relative to a person's age, size, and weight. Given Ty's current height and weight, his kidney function has increased from 50% at our last visit to around 65% today. That's fantastic! As the nephrologist stated, "That will take you a long way." 

That was the best news of the day, but his results showed other improvements. Last time his blood was acidotic, which was probably contributing to his stalled growth, but thanks to a new medication that number is normal again. We are now giving him 5 medications in the morning and 3 at night, and although we didn't get to drop anymore today, we do get to decrease his daily iron supplement so that is a step in the right direction. 

During our visit the nephrologist also noticed that Ty's speech seems delayed, and he asked if we had tested his hearing recently so I relayed the conversation I had with the neurologist. He agreed that we need to keep an eye on his speech development because one of the medications he had taken regularly (until just recently) can cause hearing damage after extended use. Given that Ben is a pharmacist, we were aware of that risk when they first started giving him the medication in the hospital, but it was a vital drug. I am not going to worry too much right now, because there could be nothing wrong. All we can do is watch, wait, and work harder with him in the meantime. 

That was a lot of information! And I'm not done yet! haha. There is one more thing I found interesting from my conversation with the nephrologist today. I commented that Ty is very active and energetic, and that it amazes me how he can go, go, go despite his health problems. The doctor remarked that it actually isn't very surprising, and he explained that many children who have experienced as much pain as Ty has at a very young age have a high threshold for pain and that their range of what feels "okay" is much larger. In a nutshell, Ty is a tough cookie and it's going to take a lot to slow him down! 

Last but not least, I will close with a tidbit about Ty's first vacation. After Ty's cardiologist told us he wouldn't be needing surgery very soon, Ben and I immediately began planning a vacation. We were so excited to take Leah and Ty to San Antonio last week to enjoy the zoo, Riverwalk, Schlitterbahn, and Sea World. Ty was entertained through it all, but it was obvious to me that he had the most fun at Sea World. He was completely mesmerized by the large aquariums and shows, and he was very excited to see the Sesame Street cast perform at the Sea World Sesame Street Bay of Play. He even got to sit on Elmo's knee, which he thoroughly enjoyed since Elmo is his favorite. I'm so thankful we were able to take that trip together. Ty won't remember it, but I'll be happy to tell him all about it when he's older. Here are some of my favorite shots of Ty during our trip. Enjoy!

Friday, April 25, 2014

Like a Weed

Ty Man is 15 months old, and he is growing fast! Yesterday he had an appointment with his pediatrician, and it went really well. About 6 weeks ago we started giving Ty a very high calorie formula because his growth had plateaued. Ty has always been in the less-than-5th-percentile, if even on the growth chart, but yesterday we got great news. Ty has gained 1.5 lbs since starting the formula, which puts him in the 8th percentile, but the really exciting news is that he has grown significantly in height, enough to put him in the 41st percentile. I could hardly believe it!

His pediatrician was very happy about his growth, and so are we. We could tell he was gaining weight, but we weren't paying as much attention to his height. This is a very good sign because the nutritionist pointed out that we wanted to make sure the extra calories helped him to actually grow and not just get fat. Ty's nephrologist once told me that height is more indicative of the size of one's veins than a person's weight. In that case, we are more excited about Ty getting taller than we are about him getting heavier.

At 15 months Ty is hitting all of his normal milestones, which I continue to find incredible. He is saying a few words: ball, mama, dadda, and a-boo! He also says "mama mama" in reference to his Llama Llama books. He is cruising all over the place, and it appears he may be walking in the near future. He is following basic commands as well and will even crawl to his room to fetch his favorite books if we ask him to. It's pretty adorable.

Ty is very much into figuring things out right now. He loves his ball drop toy, and he has begun to imitate our actions a lot, such as trying to put Mega Bloks together, brushing his hair, and even trying to style his hair with an unplugged straightener. Haha! He is constantly on the go, and he happily tears apart the house every day in order to explore and chew on as much as possible while he's awake. I have stopped putting things back into cabinets until the very end of the day (unless company is coming!), but I don't mind the mess. He can easily keep himself entertained as long as he is awake, although he does enjoy when Leah and I join him. All that boy seems to need is a place to roam and the freedom to do so, and he stays happy. He is a silly, adventurous boy, and we are so privileged to have him!

Tuesday, April 1, 2014

Changes

There have been several changes since my last post. I apologize for the length. This is what happens when I slack on my blogging ;)

Over a month ago we visited a nutritionist again. Since Ty started crawling near the end of January, he has had less patience for sitting still to eat. With Ty moving more and eating less, he was starting to look thin and tired. His body burns a lot of energy to compensate for his heart function, kind of like running up an escalator that's going down. The nutritionist put him on a renal formula that really packs a punch with 425 calories in every 8 oz can. Ty seems to like the vanilla flavor, and he already appears to be filling out. Here is a photo of Ty Man from about five weeks ago when he looked his thinnest. Consider this his "Before" photo. Hopefully soon I can share an "After" that will show significant growth.
Two weeks ago I took Ty to see the cardiologist, but the poor boy panicked and threw a screaming, writhing fit as soon as we walked into the exam room. Sadly this has been his normal reaction to medical personnel and offices lately. They tried to do an EKG, but Ty kept pulling the cords off, and eventually he was sweating so they wouldn't stick anyway. We decided to call it quits and reschedule. Later that week we returned so Ty could have his tests run again but this time under medication. That was an interesting experience. 

When we first walked into the hospital room, Ty started to cry again. The nurses gave him medication to calm him down, and within ten minutes he was acting loopy. I was cradling him in my arms and felt as he grew more and more relaxed. He then started to poke at my face repeatedly and in slow motion, and then he would giggle very slowly each time he got me. It was quite entertaining. Thanks to the medication his echo went smoothly and he was back to his normal self after a good nap. 
Several days later, Ty's cardiologist called. There are two things the cardiologist always checks: the narrowing of Ty's aortic valve (the stenosis) and the back flow of blood through the heart (the leakage). We've known for a while that Ty's leakage really couldn't get any worse, but now his stenosis has slightly worsened. Ty's doctor wanted to discuss his case with the other surgeons in a conference last Friday.

Today the doc called to inform me that their goal is to get Ty to 2 years old before surgery. First of all, I was shocked. I had no idea he could still go so long without surgery. Their reasons for waiting are these: it's easier to operate on him the larger he is, his kidneys could possibly recover some more before then, and the larger he is the more likely they can put in a larger conduit that would allow him to go longer (possibly into his teens) before he would need his next surgery. Essentially, if we can get him big enough before his first surgery, he may be able to have one less heart surgery later on in life. Bottom line: this is good news!

The doctor reassured me that the change in Ty's heart will be very gradual, and that as long as he is doing fine and still has plenty of energy there is no rush. I assured him that Ty certainly is not lacking energy. I can hardly believe how much that boy moves around for someone who is supposedly working harder to do so. 

That brings me to this: Ty is 14 months old now, and it seems he only stops moving to sleep. Even when he's sitting to eat, he's still swinging his legs, bouncing, or dancing in his chair. He is a big fan of the cozy coupe, walker, mini trampoline, and riding toys. He recently climbed his first set of stairs, and just yesterday he repeatedly climbed up and down the one step in our relative's living room. If he's in a stroller or shopping cart he wants it to be moving quickly, and although he isn't walking yet I imagine it won't be long before he starts. If he gets even more energy after having heart surgery I don't know how I will ever keep up with him!

In other news, Ty received his last synagis shots last month (to protect against RSV), and although we are thankful for them we are happy to be done with them until next winter. Lastly, there has been another change to Ty Man that you can likely spot from the pictures below. Ben finally convinced me to buzz Ty's hair myself, so he is now sporting a new 'do. Now to wrap up this post, here is a batch of photos taken since my last post. Enjoy! 

Wednesday, February 26, 2014

Fragile

This morning I woke up with a feeling that something was wrong with Ty. I definitely have my moments of paranoia where Ty is concerned: Are his lips blue? Does his breathing sound wrong? Is he tiring too quickly? It goes on, but this morning I had a reason to worry.

Ty has thrown up some in the last few days, but we weren't overly concerned about it because the feeding tube occasionally causes him to gag and vomit. Around 4:00 this morning Ty threw up in bed, but it had been hours since his last feed so a red flag went up. At breakfast he wouldn't eat, and he threw up after we started his pump. I waited for a while and restarted it, only to have him throw up again within a couple of minutes. That's when I called his pediatrician and left a message with her nurse.

As I waited for a reply, I started to consider whether Ty had shown any other signs of illness. He had no fever and seemed fine, but then I remembered something that had been bothering me. For the last two weeks or so, Ty's bowel movements have been ink-colored and sticky. Anyway, we had blamed the change on a new medication he started taking last month, but now I was starting to wonder if it meant something. I read more about the medication and discovered that very dark stool was listed as a serious side effect of the drug.

At this point I called Ty's nephrologist since he is the one who had prescribed the medication. He instructed me to take Ty to the Emergency Room at the Children's Hospital. The fear was that Ty had an internal bleed, which would have made his poop black and also caused his stomach to be upset. I felt so awful for not telling anyone sooner about the change in Ty's diapers. Now I was afraid of what it would mean if Ty had a bleed and afraid of what else it could possibly mean.

Overall we spent over five hours at the hospital. They needed to do lab work most of all, which was downright awful. Ty had finally fallen asleep in Ben's arms, so he was quite angry to be awoken and repeatedly stuck with a needle. On top of that, his vein blew three times. Ty was flat-out sweating by the time the nurses were done.
When all was said and done, everything seems to have been coincidental. His lab results didn't indicate that he had a bleed. They believe his stool has just been black and sticky because of a combination of two of his meds, so we're going to try giving those on a different schedule. We're not sure why he has been vomiting, other than he may have a stomach bug, so we were given medication for that.

I am certainly relieved that nothing serious was wrong, but it was definitely a stressful day. Usually it feels like taking care of Ty isn't much different than taking care of a healthy boy, but today the difference was clear. We are used to his medications, his frequent appointments, and his feeding tube. What makes the biggest difference with Ty is the fact that so many things that could be small problems for other children can be big problems for him. A cold could land him in the hospital. Vomiting or tiredness can mean heart or kidney failure.

At the end of today, I am thankful again for so much support from family and friends. Thank you all so much for saying a prayer or two or more for Ty today. Obviously we were blessed to find out that these symptoms didn't amount to something serious.

I want to end this post on a high note, so I will share this fantastic picture. Ty hasn't been eating very well lately, but last night he shocked us by devouring a tray full of pasta, blueberries, and chocolate chips. For the first time in his life, Ty was covered in food, and he looked pretty darn pleased with himself. We were happy too for the hope it gives us that he will eat normally some day, even if as Ben said, we have to feed him pasta all the live long day.

Wednesday, February 19, 2014

Food Food Food

Another month has gone by, and it was fairly eventful for Mr. Ty. At his one year checkup, he weighed in at 18 pounds and was 27 inches tall. Shortly after that visit, he had blood drawn to check on his kidneys again. His kidneys have been holding steady for several months now. Based on his lab results, the nephrologist calculated that they're functioning at about 50%.

Yesterday a couple of women came to our house to evaluate Ty to determine if he needed any therapy services. Before the visit, I felt confident that Ty wouldn't need any therapy, but during their assessment I started to worry that I had been wrong. Several of their questions brought to light areas of his development that I hadn't realized were lacking. Fortunately, his overall scores showed that he does not need therapy, but there were some areas that were low enough that I now have some specific areas to work on at home.

During Ty's assessment, he went through another hearing screening. He passed his test, but they discovered he had water around both ear drums. Today I took him to his pediatrician to have it checked out. Fortunately, the water is there just because of sinus problems, and his ears weren't infected.

The pediatrician and I discussed our concerns about Ty's eating. Ben and I think there is no way Ty is getting enough calories. He drinks two ounces of milk or water at most a day, and although he is not a picky eater, he still only eats the equivalent of a cup of finger foods on a really good day. It could easily be as little as a third cup on some days. I'd be lying if I said it isn't frustrating. I fret every day over calories and nutrition. I constantly wonder if there is some food, flavor, or method that will motivate Ty to eat better.

Ben and I have determined that Ty only views eating as a pastime, and one that only sometimes interests him. His pediatrician agreed that Ty's eating issues need to be addressed quickly. We think he needs to be fed something instead of formula through his tube, but his kidneys complicate things so we'll be seeing a nutritionist again soon.

I can see this blog post is getting to be quite long already, yet I haven't even covered everything that happened this last month. Early in February my grandpa passed away, so Ben and I traveled with the kids to be with our family for his funeral. I loved my grandpa dearly, and he will be sorely missed.

We also celebrated Valentine's Day, and that same week was Congenital Heart Defect Awareness Week. To keep it brief, I'll only share a few statistics about CHDs. First of all, congenital heart defects are the most common birth defects in the U.S., affecting 1% of the population, or about 40,000 babies a year. There are more than 40 types of CHDs, and they are the leading cause of all infant deaths in the U.S. Despite the prevalence and deadliness of the disease, CHD research is grossly underfunded. You can make a donation to The Children's Heart Foundation here: http://www.childrensheartfoundation.org/donate-now.

In other news, Ty is crawling all over the place, he just climbed something for the first time a few days ago (the fireplace hearth), and he has started covering his own eyes to play peek-a-boo (which is pretty much the most adorable thing ever). At last, here is the best part of my post: pictures! Enjoy!

Monday, January 20, 2014

The Big One

One year ago we were blessed to welcome Ty into the world.

I have felt a lot of emotions today as I have reflected on the last year, but I am not going to spoil this wonderful occasion with memories of hospitals and hardships. I don't want to associate Ty's birthday with the trials that came shortly after. I want only to remember what a miracle of a child he is.

Some day I will tell Ty about the day he was born and how it couldn't have been more perfect. I went into labor in the middle of the night, and Ben and I went to the hospital around 4:00 in the morning. There was no rush or fear, because we already had one child. Everything seemed a lot simpler this time around. We seemed to be the only ones in the maternity ward that night, and our room was perfectly quiet. It was still dark outside so Ben and I both fell back asleep. It was still quiet in the hospital when it was time for Ty to be born. Ben held my hand, and the nurses spoke gently as if they didn't want to disrupt the silence, and after only a short time Ty made his appearance. They placed him sideways on my chest, and the very first thought I had when I saw him was, "He has the Gustin toe-gap," and I chuckled to myself. Then I admired his head full of dark hair.

Ty spent his first day being snuggled by loved ones and sleeping in the arms of his mommy and daddy. He was easy going from the start, and we were completely smitten. Leah was smitten too from the moment she hopped onto the bed beside me to admire the little burrito in my arms.

Today I am thanking Heavenly Father for allowing our sweet little boy to stay on this earth with us. I am thankful for the opportunity I have to get to know Ty. Let me tell you about One-Year-Old Ty. He is 27 inches tall and weighs slightly more than 18 pounds. He is good natured, social, and very expressive. His favorite food is cheese. His favorite book is definitely Llama Llama Hoppity Hop. He will stop what he's doing and dance when he hears catchy music, and he seems intent on speaking louder than Leah so he won't go unnoticed. He loves when Leah plays with him, and he is very ticklish. His favorite game is peek-a-boo, which he has actually just started doing himself by turning his head away from us and quickly turning it back. He enjoys swinging and being tossed in the air, and he likes it when I sing to him and even laughs at me half the time.

The world is better with Ty in it, and I am so blessed to be his mom.

Here are some pictures from the party we had to celebrate Leah's and Ty's birthdays. We were fortunate that many of our family members could celebrate with us. It was a great day of good company, good food, and really good ice cream cake. As Leah exclaimed, "This is the best birthday in the whole world!"
Ben had the day off work today, so we had some more fun for Ty's birthday. We spent a few hours at the OKC Myriad Botanical Gardens and gave Ty another cupcake this evening so we could sing to him again.


HAPPY BIRTHDAY, TY!