Wednesday, July 31, 2013

We're approved!

That happened much faster than expected. I received a call from Children's Hospital pharmacy saying that Jax's hGH has been approved by insurance and that I had to schedule our training appointment with our Endocrinologist-nurse to set up a pick up time/date. We weren't expecting this to all go through until the end of August, with training some time in September. Given the sky-high cost of this treatment plan, we were expecting some red tape in the process, but that didn't happen!

Between the nurse's vacation next week and Jay's work schedule, we decided on August 13 for the training and pick up. I'm also waiting on our 'welcome package' from the drug manufacturer which will have supplies and the backpack-cooler I'll need to have cold and ready to go for pick up day. Yup, we've got another 'backpack' for Jax's supplies.

I did a lot more reading on the subject lately, and I feel a lot better about it. I was never quite understanding the difference between GH (growth hormone) and steroids, and now I know there is QUITE a difference.

This is the company providing Jax's specific GH. And this is their page describing the use of the product for Jax's specific condition - SGA.

I've had a few messages asking me how a child is considered for this treatment or if a parent should be talking with their child's pediatrician about it. I will first start off by saying that a Pediatric Endocrinologist has to be referred from your child's pediatrician or another specialist that the child may be seeing. They are not in the business of making tall people, or really even what we all think as 'average' height. Average to the general population is much taller than in the Endocrinology world.

Our process started one year ago when the boys had their 4 yr old physicals. They were both still exhibiting some developmental delays along with being very small. One child was on the 5ish% of the scale and the other not on it at all. Our pediatrician said that she likes to see all 'preemie-related' issues to resolve by this age. She sent us to a Pediatric Genetics Specialist to just make sure there wasn't something bigger happening that we were missing. We were also sent to a Child Development Center to make sure we had all our bases covered for the developmental delays (this is where their speech 'delay' was categorized as a Speech Apraxia disorder).
This was a long year of appointments.

The good news was that the boy's genetic testing came back clear, GREAT! But the Genetics Specialist said they both had 'short/small stature' meaning they needed to see a Pediatric Endocrinologist. Given the fact that neither my husband or I are considered 'short' in the Endo-world or even the regular world, the boys were definitely much shorter than expected.

At this time, they had their growth hormones and thyroids tested (blood tests), their bone age tested (X-Rays) and the Genetics testing came in handy to show there were no specific disorders at play. They were both Dx'd with SGA, meaning they were smaller than they were supposed to be at birth, and they never really caught up. We know their blood flow was greatly compromised during my pregnancy, so it was the mono/mono twinning that stunted them. It affected Jax much more substantially. Since Jax has suffered from extreme GI issues his whole life, his growth has been stunted even further, so here we are.

If you're worried about your child's size, it would most likely have been discussed at your child's yearly physicals with your pediatrician by the age of 4. But, as most of you know, the parent sometimes needs to speak up if they feel a certain area of care isn't getting enough attention. Neither Jason or I had to  push the subject at all since it was all recommended to us. When you see our boys next to other children their age, Brady looks like a very small peanut, but Jax just looks 2 years younger. Jason and I were both very small children, so a child the size of Brady doesn't surprise us too much! He's a little bit shorter than expected, but we at least see 'growth' from him each year. He actually grows out of his pants one year at a time, does that make sense? Jax still wears 3T pants, and I'm shopping for 5T's for Brady this fall (to roll up of course) but that's a difference I tend to notice.

At age 5, Jax has the height of 37" (26ish lbs). I just read that GH can help with motor skills/coordination and hunger. We're really interested to see if this helps Jax in departments other than just height.



Friday, July 26, 2013

30 Seconds of Sluggers


I turned the camera on just in time to catch Jax batting and then Brady is up behind him. It's just a quick glimpse into 5 yr old t-ball :)

video

I scheduled Jax's EGD for the first available, which isn't until the last week of August. I was hoping it would be sooner and not so close to school starting, but I guess we have to take what we can get.
We are packing up to get ready to go to Jay's hometown softball tournament for the weekend. It looks like random COLD weather... odd!


Brady playing Ring-Around-The-Rosie with statues in the 'Healing Garden' at Childrens Hospital. We were having a snack while Jax was in Occupational Therapy.

Tuesday, July 23, 2013

5 yr physicals

The boys had their 5 yr old physicals on Monday. We all know they're small, so no need to rehash all that! The good news is that Brady has remained on his own curve pretty well, so even at 5%, it's a healthy steady gaining. Jax of course has a very lousy curve with pretty much no gaining of weight over the year.
Because of Jax's poor growth, the pediatrician agreed he needs to have the EGD (scope) done by the GI specialist. She said he doesn't have the luxury of assuming "he's just a puker" without exploring all options first. She plans to call the Specialist and consult with him about also taking tissue from Jax's mouth since he has some odd whitish bumps on the roof. She said it may be nothing, but just to check it out.
She also gives her support for Jax to move forward with the hGH treatments once approved by insurance from the Endocrinologist. So that was nice to go over once more with another doctor.

Brady's Mulluscom was a bit worse and he also had an eczema flare up from being in pools all weekend. She said he was re-infecting himself with all the eczema, so that's why his Mulluscom (bumps on his legs) is still around and looking bad right now. I'm using his steroid cream for a few weeks and still going to try and forge through the bumps without seeing a Dermatologist for them, but we'll see how the next few months go.
Brady also has classic symptoms of seasonal allergies now. Jay and I noticed he had been snoring and sleeping with his mouth open, random running noses and just all around not doing well with bug bites. The doc said he had the classic 'allergy crease' on the top of his nose (which shows the nose itches) and when she looked inside his nose/throat, she said it looked very 'allergic'. So Brady is now on a nasal allergy spray and we should see a difference in two weeks. She said it will help with ear infections as well, so I'm glad we caught this.

The boys will have their eyes and teeth rechecked this fall (preemies have to have pediatric Ophthalmologists check each year) even though they passed the test the nurse administered in the office. This was the first year they could actually communicate well enough to do that test! Brady was SO cute approximating the words (girkle = circle, gare = square, gackle = apple and HOUSE = house). The doc liked his game plan for speech for 4k and hopes for more improvements. She's been watching all his reports and knows this will be a long road for him, but we all hold out hope.

Jax is showing some feeding improvements from the 2x therapy sessions with Nick back-to-back this week. Nick sent me a video of Jax feeding HIMSELF an entire Goldfish cracker - check it out down below!



Every time I think the boys are getting so old, I realize I can still do THIS at a store with them...

Brady being a thug.

Boys playing with some neighbors.

video

Sunday, July 21, 2013

Fish!

We had a weekend full of swimming!
We grilled out Friday night and had tons of a pool-time on Saturday at Rachel's pool, and then another full day on Sunday at our neighbor's country club. The boys have been loving the water, so we've decided to find them some swimming lessons this winter.
Back to a busy week starting tomorrow, so it was nice while it lasted!

Jason and Jax taking laps


Brady warming up with Grant and Kate.


Brady at Rachel's house.

Jax at Rachel's house.

Rachel snuggling up to Brady.

Rachel and Janel with the boys.

Yes, this was happening in the house last week. We had a water leak through our living room ceiling as a result of Jason 'fixing' our master bath faucets... (sigh). It's all fixed up and just needs paint now, so at least the room is back in commission again!

Tuesday, July 16, 2013

Feeding and GI updates

The boys had a nice birthday on Sunday. We traveled north to Green Bay to attend my grandpa's 80th birthday and homecoming. We stopped at Bay Beach beforehand so the boys could get in some fun after the 2 hour ride. Bay Beach is a childhood staple of anyone growing up in NorthEast Wisconsin!

The boys love running around my grandpa's yard and they even got a candle on grandpa's cake too. It was a really nice day, and we loved seeing my grandpa look so great.

For the last two days, the boys and I have been hanging out at Children's Hospital for Jax's 2-day outpatient Feeding Clinic. He did 4 meals with a feeding therapist and/or psychologist, and he did well. He was much more gaggy/pukey for the first two meals, but they did teach a great breathing activity to relieve the feeling to puke once he gags. He blows a napkin and it's working pretty good.

The GI Specialist met with us briefly today per my request yesterday to discuss Jax's current vomiting issues. He's been vomiting 1-3 times every day for the past month. We assumed it was from his cold last month, but it can't continue to be from that. The GI doc said it's been too long to just ignore, and he wants to perform a scope (EGD). Jax has had two or three scopes as an infant, so I'm familiar with the procedure, but I'm still not happy that Jax will have to go through general anesthesia for it.

The doc wants to test for a thrush infection of the throat which can be caused from using inhaled medication (his daily asthma meds) and to test tissue samples for EOE and other GI related disorders/diseases. The scope will also check for any physical issues like ulcers etc. The original scopes performed on Jax didn't give us many answers, but I don't recall tissue being tested for anything. Back then the GI doc said that if Jax had EOE, that his treatment would've been the formula he was already on. But now the current doc is saying that he needs to be tested and things can change dramatically over the years.
So, while we don't want to 'do' the procedure, we can't just ignore all the of the new unexplained vomiting that Jax is having. Watching him in pain and knowing he's losing precious calories is just heartbreaking some days, even though he jumps up and says, "I'm fine!" the moment he's done! The boys have their 5 yr physicals with their pediatrician on Monday, so we'll run it by her for a second opinion, although, I have a feeling she'll agree to check things out.
I'm expecting a call this week to schedule the procedure. Otherwise, we'll just keep pushing his feeding therapy as much as possible. He was doing decent with banana at the end of a straw today, so we'll keep it up!

Bay Beach rides!

Nana and the boys by the Bay



Train ride!

The boys with Grandpa for his 80th and their 5th!








Loving all their birthday gifts

Sunday, July 14, 2013

Happy 5th Birthday!

The boys had a great baseball party yesterday. We kept the party small and are trying to eventually shift it to be more kids than adults. The kids played baseball, hit a pinata and even smashed cake into Brady's face, which of course, he loved!
Jax had a few moments where he wasn't doing the best and kept needing to sit in the shade with water. My mom and I cooled him down with wet wash clothes and brought him in to check his asthma signs. He later vomited outside, but of course... ran off without incident afterward. Later that evening we realized Jax had a bulls-eye shaped bug bite with what looked like a STINGER in the middle. Jason used a tweezer to pull it out and apply antibiotic ointment. Now we wonder if he was stung by a bee and never said anything. His pain tolerance is so different than other people!

Brady's GI system is a bit 'off' this morning, and I'll leave it at that, but that seems to happen after parties where he gets lots of sugar, food dye and all around junk. Gotta let the kid indulge sometimes!

Today is their official birthday and we're heading up to Green Bay to see Grandpa for his 80th birthday! He finally came home from the hospital on Friday after 2 months from his heart surgery. He comes to us each year on his birthday, and this year, I said we'd come to him for a birthday dinner with the rest of the family. We're so happy he's out of the hospital!

We will do something fun with the boys this afternoon before going, and it should be a really great day, I can't believe these kiddos are FIVE now! I still stand behind the 'long days, short years' theory, but soon enough, they'll be in kindergarten (one more year!) and I won't be home with them each day as their primary care taker... the years will really start to fly then I think (tear). I know they're still considered 'preschoolers', but they have definitely become 'kids' now.

Jason, Janel and I tied balloons to her gifts to the them and put them in their room while they were sleeping. What a fun surprise to wake up to for them!

Happy Boys

A morning filled with giggles.

The boy's cakes were awesome!

Some grandparents and friends.

Some of the kids.

The 'peanuts, crackerjacks and Gatorade' station for the game.

Baseball pinata

One of the games.

The kids (minus the Bonin twins)

There they are! Look at the baseball dress Shannon made! Too cute!
Cake time!

Brady loved it!

Love him!

The family

Jason and Jax.

Jason and Brady, er.. Bernie Brewer...



Thursday, July 11, 2013

Summer Therapies

Brady finished his summer speech therapy this week. I can't believe it's mid-July and he's had 12 sessions already! He picked some flowers at the store for his therapist to say thank you, and he was SO cute about it. When we got to the school, his therapist was finishing up with another student and her father. Brady hid the flowers behind his back so she didn't see them. When she came over to us, he pulled them out and giggled. I'm raising a little Romeo!

After his session, the therapist gave me a handout with ideas of how to keep Brady going over the next two months until school starts back up. I asked her if she felt Brady would speak perfectly some day and she sort of looked stunned. I apologized and told her that I'm growing increasingly worried about him now that he's turning 5 and still can't say his own name and is still at only 10% intelligibility. She put her hand on my shoulder and told me how she does have a high school student who was rather severely apraxic, and she speaks 'pretty good' now, but still remains in therapy and will most likely always have an impediment. Although, she wasn't quite as severe as Brady, but she didn't see her until the age of 9, so 'maybe' she was as severe younger.
Now... WHY do I ask these awful dreaded questions??

Of course, this is her opinion from seeing Brady 12 times, but I wasn't shocked. I would've been more shocked if she said, "yup, he should really pull it together by 1st grade!" and yet, I still wish for that. She told me she's more concerned that his reading and writing will be most affected without expressive speech. We'll just have to work hard over the next year to gain as many skills as possible! He has 4x/weekly sessions starting in Sept for the entire year, so this will be a great year for him.

Jax had Occupational Therapy at the hospital last night before his t-ball game. This therapy is SO amazing for him. It works on strength training, balance, core muscles, fine motor skills, self-care and his dreaded pencil holding/writing. The therapist had such an issue getting him to hold a pencil properly that she put him in a special pencil grip to guide him. She gave me one to take home. Typically they don't like children using these because they get too used to them and depend on them, but she said it's necessary for him right now.

He did better with scissors and self-care. He had some issues with balance and strength while doing an activity in the gym, but he was DETERMINED and when he got a free pass to skip one round, he refused, placed himself back at the front and re-did it. Gotta love that determination! He is much more interested in the physical drills, rather than the fine-motor drills seated at a table.
He got quite squirly and wasn't being a good listener or rule-follower when seated at the table. The therapist seated him on top of a rubber stabilizer for him to work on core muscle strength AND help him with attention and focus. It didn't really work.

The therapist said he tries to distract her to get out of the drill (much like what Brady does when asked to speak). I told her I wanted to jump in and discipline him so badly, but I didn't want to interrupt her therapy. We decided that next week, I will not attend the session so she can do the drills with her own discipline.

Jax has a busy week next week with his 2-day outpatient Feeding Clinic. We'll attend lunch and dinner for two days for some intensive chewing therapy with the team, then back to twice weekly with the private therapist after. I'm excited at the possibility of better eating!

This weekend the boys turn 5 and have their baseball party that they've been asking for since spring. It's so cute how EXCITED they are for their birthday. I love these years!
The party is Saturday, and then on Sunday, which is their actual birthday, we'll be headed up north to see my Grandpa for his 80th birthday. He will be released from the hospital tomorrow after 2 months in the hospital from heart surgery. What a great weekend for the guys in my life ;)

Many pictures to come on Monday, be prepared!

Monday, July 8, 2013

Happy Fourth of July Weekend!

Whew, we've had a busy few days!
We left for the Garber Cottage on Thursday and some gorgeous days up on Loon Lake with some of our best friends. The boys love fishing, tubing, boating and jet skiing so much that I see a future with Jason on the water often as they grow up.
Jax's GI and asthma issues were a little testy throughout the weekend. We're assuming he was still purging his cold from last week. He needed a few extra inhaler rounds and by Saturday, I was hand syringing in his meals to keep some calories and fluid in him. He wasn't chronically vomiting, but he wasn't doing well at meal times. He would fight us to eat or drink, and then he'd vomit it all up. Poor kid.
He's doing better at home now and seems to be bouncing back with full meals by mouth again. He sees his private feeding therapist twice this week with the outpatient clinic next week, so I'm glad his tummy is settling down.
We have a busy week of therapy appointments, their baseball game and before we know it... it will be the boy's FIFTH birthday this weekend... wow, when did that happen? Ask me if I'm ready for their party... lol, no. That is my goal in between life this week! July is just always our busiest month of the year. Lots of fun, but LOTS of going, going, going!



Brady and Macy

The gang

Fishing


Jason and Jax

Big B

Jason and Jax tubing (Jax is a little maniac with anything of sport)

My studs

Brady dancing in his grilling outfit from the Garbers. (Yeah... he has no pants on, that's normal, right?)





** I'll attach many more photos later in the week!

Monday, July 1, 2013

Human Growth Hormones


So, it's official, Jax will start growth hormone treatments once the drugs are approved, which will take awhile - maybe not until the end of summer until we actually get them. The appointment was so late tonight and there were three docs in the room, and the main specialist who is the partner of the last person we met literally looked at the rate of growth/weight of the boys from the past 6 months and started with Jax saying... "Yeah, not only did his growth not 'speed' up, but it's almost even a little slower if not the same. He is definitely a candidate. So, do you want to do that?"
I guess he knew we spoke at length with the last doc, but it just seemed SO flippant sort of! I made him show us the charts on his computer and talk a little more about it. He showed how Jax is so far off the normal chart, that it's almost impossible for him to 'catch up' on his own, but it's not medically necessary.

I asked to review Brady before we make the final decision (even though Jay and I did agree in advance what our decision would be depending on today's results) and Brady's growth wasn't great or bad, but he IS on the charts. He said Brady 'could' receive the treatments, but he does actually show a possibility to reach a normal height without the treatment.

So, we decided that Jax will receive it and we'll watch Brady with our pediatrician, and even the specialist said that he'll take a peek at Brady when he sees Jax every 6 months too. I said it would be crazy to see Jax overgrow Brady, and that didn't feel right either, but the doc said he didn't suspect that would happen. But it 'could', so we'll watch and see.

Brady is 3" and 5lbs more, which doesn't sound like a lot, but in the Endocrinology world, I guess 3" is a lot. Especially when the 'tall' kid is in the 5th percentile on the chart. He said Jax was so stunted at birth and then his nourishment has been severely compromised over the years given his GI issues. Exactly what the first specialist said, so it was nice to get a 2nd opinion. He said it's just going to help him make up for he was supposed to have.
(Brady - 31 lbs, 40", Jax - 26 lbs, 37")

When he gave the boys' their physical evaluations, he lifted Jax down from the table and said, "Wow, he is really tiny"... um, yeah, hi, hence we're here. We could tell he wasn't comfortable with Jax's lack of weight gain, but I told him we see the entire feeding/dietician/GI team for that, and it's obviously his biggest challenge. Hence... the stunted growth as well... boo.

When the approval comes in, and the order is sent in (we have to get it from the hospital lab) we then go in for 'training' on the administration of the drugs. The doc said Jax may need it for a few years, or even until he's a teenager. Since he doesn't have a growth 'disorder', we can stop at any point and test his growth without it for trials if we want too, so at least we have some control over it. That surprised me though. I think we both thought it was just for a year or whatever.

The boys started slight colds at the end of last week, and it's kicked Jax's asthma into play since Sunday. He had a rough Sunday night with vomit and low pulse-ox, so I actually brought him into the pediatrician between my allergy appointment and the later Endocrinology appointment (and Jay brought Brady to speech therapy) so it's been a run-around kind of day. Jax's lungs are ok and we just need to treat with the Albuterol every 4-6 hours until he clears it. The doc then said she will discuss Jax's asthma course at his physical with us in a few weeks because she is really thinking of having him see an Immunologist/Pulmonologist and change his drugs up. He's on the highest dose of inhaled preventative now, and he clearly still has issues. The doc said she will refer him to the allergist that I actually saw today for myself. I really liked him (hopefully my new cocktail of drugs work) so we'll see where that goes.

Crazy next few days of getting things done while Jay is on a trip and then we're off to the Garber Cottage for a long weekend with the kids. We could all use some downtime together!

I got the boys these bracelets from Sticky Jewelry and they love them. A small strap is attached by velcro that you pull away to see the back of the plate for our names/numbers to contact. I didn't like the last name or our numbers on the front, and these come in children's sizes, so I really like them. The doctors today thought they were really cool.