Dear Typical Moms

I recently read an amazing blog post by a fellow special needs mommy. It's so nice to see these stories because they remind me that I'm not alone in this journey and hopefully show "typical parents" a glimpse into our lives.

To understand my following comments please read that blog post h e r e.

This is exactly how I felt when I was asked to come to a mommy's home for a playgroup. A playgroup of mommies and babies that I had never met before and more importantly, they knew nothing about my normal as a special needs mommy. How would I explain the feeding tube, the diagnoses, the scars, the delays? I've got to make sure the solid foods the other kids have aren't in reach of Kaleb. The hardest part for me was watching the children who are younger than Kaleb walk and run and talk while Kaleb crawls around in silence, except for the few babbles he lets out from time to time.

The playgrounds are another place that I feel out of place, just like this mom. When you find out you're going to be inducted to the "special needs group" you wonder if your child will go to college, have a family, talk, walk, be in regular school classes, etc. You don't think about the awkwardness of having friends outside of this new world, new and old. Not to mention the other questions

Luckily for me, that playgroup of mommies and their babies have now become my friends. They understand the best they can and ask questions which I love.

If you see us out, please don't just stare and point...ask questions. Just like you, I'm always happy to tell people about my amazing children.



Kaleb went back to St. Louis this week and while there we found out that this was going to be his last pair of pre-surgery casts! How exciting! Dennis was able to schedule all three of his surgeries and speak with anesthesia for his pre-op.

It looks like Kaleb and I will be staying in St. Louis for two weeks in May during his first and second surgeries. Then a month later we will all travel to St. Louis for his last surgery, and from there we will head to Chicago for our Trisomy 9 conference. Everything worked out so perfectly as far as timing and travel arrangements. Our social worker also got us into the Haven House which is similar to the Ronald McDonald House. Here's our plan of attack... :)

May 4- all 4 of us leave Florida for St. Louis
May 5- Arrive in St. Louis and begin stay at Haven House
May 7- Kaleb's first surgery (place pins in feet and sever tendons, casts put back on)
May 8- hopefully discharge day if all goes well
May 9- Dennis and Nolan fly back to Florida
May 21st- Kaleb's 2nd surgery (cast change in the OR due to pins)
May 22ndish- Kaleb and I return to Florida
June 14thish- All 4 of us leave Florida for St. Louis
June 15thish- Arrive in St. Louis
June 18th- Third and FINAL surgery (remove casts and pins)
June 21st-23rd- Chicago for our Trisomy 9 conference!!

After Kaleb's last surgery he will have to build up to wearing braces with a bar in between to 23 hours a day for 2 years. I think in the beginning its only a few hours...or maybe its the opposite way and 23 hours to begin with for a few weeks? Who knows, I'm just happy to know future dates for St. Louis! Yay!!

Thanks again to everyone for helping with Nolan, donations, gas cards, and of course the Southwest Miles into Smiles program for this most recent trip this week. They gave us free round trips tickets for medical transportation. We are forever grateful!


STL update

We have now been traveling to St. Louis for Orthopedic treatments for Kaleb for about 2 months. This has definitely been an interesting journey filled with ups and downs. Sometimes I feel like I'm a crazy person who has chosen the most difficult thing to do but then I remember that this is necessary and I'm only doing what is best for my child, crazy or not.

So far Kaleb is on his 4th set of casts bilaterally and will hopefully only need two more casts, three surgeries, and then many follow ups.

It's really neat to see the progression every week. For example, Kaleb's middle three toes on both feet have always been pulled up (they don't extend to the floor when standing). Since the beginning of his casting though almost all of these toes have been stretched so much that they aren't pulled up anymore. Even during his ortho treatments when he was a baby (basically the same treatments, just different doctor) we never saw these toes come down at all.

Where there is great progress there is also great worry. The way that Kaleb's feet are positioned in the casts basically are in the shape of a ballerina standing on her toes (sorry..I'm no ballerina so the specific term alludes me). Because of the way that his feet are pointing and stretched it pulls his feet down. When the casts come off his feet it looks painful. Think about sitting in a specific position for a while and then getting up and moving that body part. But with Kaleb, his feet are always in this position and have been for months. When he got his 2nd pair of casts off, his feet were actually very bruised, black and blue. I was so worried. The doctor assured me it was okay but it's hard to see bruises like that on your child. Especially when your child can't communicate to you what it feels like, if they are in pain, if they can move their feet, ect.

All in all things are good, especially when I think of the alternative and the very real possibility of Kaleb being able to walk. I cannot wait for this process to be over (the end of the surgeries...I can deal with the twice a year follow ups and then once a year). It's hard on all of us and I hate dragging Nolan along...he's been doing very well considering he's in the car for nearly 17 hours during a one way trip.

Thanks to everyone that has donated to us or helped us in anyway. Especially if you have traveled with me...it's not easy. We appreciate each and everyone one of you!


Gas Gas Go Away

My goodness. Today was rough. I think everything that Kaleb is going through just makes his "terrible twos" so much worse. And it's even worse with Kaleb because you can't communicate with him. He wants everything and he wants everything now. And when he doesn't get what he wants he screams and bangs his head (he's started punching himself now). It's so unbelievably frustrating. Hes always been so sweet and today was just...rough. You never know what will set him off. Lately he gets set off when he sees laptops, iPhones, sippy cups (anyone's), anything with a straw in it, random stuff. He just pitched a fit over a cd cover that I bought today. Aghhhh!

It's even worse because he hasn't been sleeping much since we got back from St. Louis (trip #2). His tummy issues are the root cause but we can only "manually burp" him through his feeding tube so much. Some of the gas is already in his intestines and that stuff you just can't get out through his tube. I'm definitely looking forward to April 1st when we can start another round of treatment for his Small Intestine Bacterial Overgrowth. At this point it's reminding me of life with a newborn and that is one thing I do not miss. 

Well, Kaleb's screaming in his crib so we must go get him...g'nite. 


Ready. Set. SOCCER.

Nolan started soccer a few weeks ago. We were all so excited, he was excited. This is how soccer has gone so far...

Week 1: Everyone's happy and meeting the coach and learning names. Nolan sits in the circle on the field for a while (with Dennis next to him). He cries some. He does a soccer exercise or two and I'm super pumped. Then he freaks out after the first 20 minutes and stops. He demands donuts if we want him to continue with practice. Being the awesome parents we are, we basically tell him we will give him every donut in the universe. He goes back to practice for a few minutes. Walks off the field, cries, runs away and doesn't return to practice. I hang my head and apologize to the coach. No donut was given.

[so happy]

[right before the breakdown]

Week 2: The WORST. I'm pretty sure we started bribing him with donuts a day before his actual soccer practice. He was tired and cranky and hated everyone. He yelled at us, the couch, and his team mates, folded his arms over his chest, gave a stank face and walked off the field. He ran off more times than I can count. He said he was hungry and just wanted to go home. In all honesty, I got home and was a bit more upset than I probably should have been. It was like I was back in highschool..."you made me mad so I'm going to ignore you and stomp around". I already told you how awesome of a parent I am.

I may or may not have thought about bringing a dozen donuts and waving them at him from the sidelines.

Week 3: I was terrified. I made sure to bring tons of snacks and even bought him his very own special sports drink bottle thingy for their water breaks. Started off strong, as usual, had Dennis sit in the circle with him. He answered the coach's questions and when it came time for the practices he did them, almost every single one of them for the entire 45 minutes. He did have a few minor temper tantrums, most demanding donuts or coke in his water bottle (which we don't even drink so not sure where that demand came from). He carried his soccer ball in one hand and his water bottle in the other and as long as you didn't tell him he had to put his water bottle down things were pretty awesome. He made some goals and we screamed so loud for him and the hug at the end of practive was unlike any other hug. We took him to Red Robin for his fave macaroni and cheese and didn't even need any donuts or coke!

[water bottle, check. ball, check]

[analyzing the contents of his water bottle, gatorade was not good enough for him]

It should be noted: Hours after soccer practice Nolan was moaning and crying on the floor in my hall way at 1:30am with a 103.5 fever. Some may argue that he was behaving himself because he was sick, I on the other hand chose to think that he really thought about his previous actions at soccer and decided that he needed to be respectful to all involved and give it a go.

[sorry for the overly long post about freaking soccer]


The Package Tour

Just to show you how bat shit crazy I am....

Last night I found out about the Package Tour (98 degrees, BSB, and Boys II Men tour). I was so excited and told a friend of mine we were going, no ifs ands or buts. I looked up the tickets, found the date in my city, and was ready for presale in a few days. I was so excited to go to a concert, something so dumb but I really need to get out of the house and be part of mindless things. Really..it's for my sanity.

Then shortly after all my excited a friend reminded me that I will be in Chicago on that date. We are going to Chicago in June for a big meet up with our Trisomy 9 family...it will be like a huge family reunion. This is great and all but I was so excited for a night away from all of this crap that we go through on a daily basis. So what did I do?

I sobbed. What the hell is wrong with me? I couldn't even catch my breath during it all. I'm obviously not of sound body and mind...because seriously I cried over a concert. Obviously the meeting in Chicago is insanely more important than a concert but it's the meaning of it all. Trisomy consumes me. Everything I do or think has something that can be tied back to my son's Trisomy diagnosis.

When is our next surgery? What test results have I not gotten back yet? Who is going to watch Nolan? What are we going to have for dinner (we try to eat Paleo so that Kaleb''s severe GI issues will decrease)? I need to make a list of medicines, questions for any given doctor (reminds me I need to do this for tomorrow's appointment), emergency numbers, etc. What is this bump on Kaleb's body, why is it there, will we be in the hospital soon because of the bump? Does Kaleb feel warm? Does Nolan feel warm...because if so I need to keep him from Kaleb. What do I need to disinfect today? How did Kaleb's poop look today? What day of the week is it so I know what medicines to give? What surgery will I have my son go through with his feet. Will we be going to St. Louis? Do I trust his doctors? What toy should I get Kaleb for birthday/xmas/etc because it has to be therapy related.

January is trying to break us and for now it's winning.

And btw, if you are my friend on FB and go to the concert and then you post photos of the concert. You will probably be un-friended. ;)


What's a Mother to do?

I've been wanting to blog about our recent trip to Shriner's but I really didn't know how to react. I cried for a while and was really upset...so upset I really haven't talked to many people about it. Now I'm ready to tackle this new hurdle just like we have all the other ones....we can do this!

Here's a little history first...
*Kaleb was born with severe foot deformities (shocking...I know)
*his right foot had dislocated bones and was diagnosed with "congenital vertical talus" (CVT)
*his left foot did not have any dislocations but was still very "deformed"
*Kaleb was in serial casting for 6 months to help turn them back the correct way.
*After casting Kaleb had surgery on his right foot where his achilles was cut and a pin was put in through a minor incision to hold bones together. This was when he was 6 months old. This was to fix his CVT.
*he was given ankle braces after the surgery but told to only wear them when he began weight bearing (almost a year later).
*Kaleb had another surgery on both legs to lengthen his tendons to release his feet down.
*since his tendon lengthening his feet have gotten a lot better but his left foot has been the worst so when he stands up or cruises along something he is walking on the inside of his leg/ankle. His right foot (the one with CVT) has been doing pretty well.

So we go to Shriner's for a second opinion on his left foot to see if anything could be done to correct his problem with it. Kaleb had x-rays done and then we met with their Ortho doctor. He showed us the x-ray of his feet and damn...it looked like his x-rays from when he was born. His left foot's bones are actually in line and doing really well (despite our concerns and his PT's concerns). Then we look at the right foot which was supposed to have been repaired when he was 6 months old. He says, "his right foot still has CVT".

I told him, "but that's the foot that he had surgery on". I thought maybe they got the feet switched around on the x-ray..but nope. It was clear as day. His bones in his right foot were all jumbled, like a tangled mess of developing bones. This isn't something that can just be fixed with casting or braces or therapy. It has to be fixed surgically...again. It's not an optional surgery.

I was devastated. As soon as the nurses and doctor left the room I just cried...trying my hardest to keep the tears in because I really hate doctors seeing me break down. I couldn't wait to get in the car because I needed to cry, I had to cry.

Now what do we do? The doctor told us there are two types of surgeries to fix CVT. One of them is new and minimally invasive which is what Kaleb had done at first. This was created by a doctor in St. Louis who is now a pioneer in the world of CVT and travels all around the world to teach other orthos how to do this surgery. The other surgery is a major surgery requiring two large incisions to put all his bones and tendons back together with several pins and around 4 months of being in casts. We agreed to do the surgery and were given paper work so we could get clearance from FIVE of Kaleb's specialists (to allow him to have surgery given his other systems are in good shape).

I left Shriner's planning out my week and how I was going to go to five different doctor's offices and make sure they fax their paperwork back to Shriners, along with planning a birthday party and many other doctor appointments and testing.

Then I posted in a  CVT group on FB about what happened. As I was talking with parents on there I found out that our Ortho did not follow the exact steps for this newer minimally invasive surgery. Children are supposed to be put into braces with a bar across for 23 hours a day for up to 2 years. This was never done.

I trusted our Ortho and never researched what he was telling me when Kaleb was 6 months old because I had no reason to not believe him. Why would you follow a new practice but not complete the steps? I also talked with others who's children's first surgery did not work either and most of them traveled to St. Louis to be worked on by the pioneer of this new technique. And to my surprise, he is part of that FB group and he has reached out to me about reviewing Kaleb's x-rays and treating him.

What would that mean? Multiple trips to St. Louis and years with a bar between his feet.

I still have not decided what we will do. I still haven't even given Kaleb's doctors their paperwork for clearance. Either way Kaleb's development will be hurt because of constant casting or bracing. He's been doing so well...standing and cruising along couches and benches.

It's all so scary, my son will be able to walk and now I have to make the best decision to make that as easy as possible for him because...lets be honest...he already has factors working against him in order to walk. If we do the major surgery he will have large incisions and we now know that Kaleb develops larges keloids on his incisions (think of scar tissue bubbling up...that's what it looks like). And he already has these keloids down his stomach and on both of his legs.

What's a mother to do?