Thursday, August 30, 2012

Remembering Les...

 I have tried writing this blog post all day. Each time I would start to type, it didn't seem right

My family suffered a devastation yesterday with the unexpected death of Les. For all intensive purposes, he was my step-father. He and my mom had been together for almost 20 years.
He had been having some heart issues this year, but we thought he had gotten through them. He had a massive heart attack on Wednesday afternoon and he left us all way too soon.
He loved the outdoors, hunting, fishing and of course, his three grandchildren... who all called him Bumpa.

I'm so heavy with sadness right now...

He was telling me how much he loved my mother and how Adam and I were his children...

Which made me teary eyed and I told him to stop ruining my makeup... and he laughed.

Tuesday, August 28, 2012

Burnin' up

I had to go and say a NORMAL cold in my last post didn't I? Total rookie-blogger move on my part WHILE they still had the cold...

Well Brady's fever came back on Monday and was still here today, so he bought himself an appointment with the pediatrician. She is stumped. His ears, lungs and rapid strep test were all normal. It's odd for a child to have a fever go away and then come back on day 4/5 of a cold. So I just have to watch him and bring him back in if his cough worsens (or other symptoms start) or if he still has a fever tomorrow.
Hopefully it's gone tomorrow and we can be done with it. The doc also said she didn't receive Jax's blood results yet for the immunization tither, so we're still waiting on that.
Jax's stomach didn't accept his lunch today, but otherwise, he's actually reacting rather well to a cold that seems to be taking Brady down a bit. Who knew?

Sunday, August 26, 2012

A real bite!

Wow, the last few days have gotten away from me, busy busy.

Jax took a real bite of graham cracker with Mr Nick on Thursday during his feeding therapy! He bit a small corner, and then Nick had him chew on his Z-Vibe feeding tool, then he took a sip of milk and it was gone! There's a video, but we're trying to figure out how to get it off Nick's phone and to my computer - if we figure it out, I'll share for sure. I was sobbing in the therapy office while watching it.

We tried to do the same thing at home, but it's not as good as Jax did in therapy. He ends up getting the cracker mushy in his lower lip and then swallows it with milk, so we need to really work on it.

Brady started a cold on Friday and Jax started it on Saturday. Brady had a fever and Jax had an unsteady tummy, but it really hasn't been too bad at all! I doubled Jax's preventative asthma inhaler and so far... it's nice to have "normal" colds around here.

Jax says 'Mumma' about 1,000 times a day now. I think Jason is about to pull his hair out listening to it. We were warned for the past two years! The term, "Mumma...mumma...mumma...wha da?" is played on repeat around here now.

You can only smile, right?!

Nana Jayne sent the boys some painting projects. They are completely obsessed. A new found passion!

Wednesday, August 22, 2012

All Good in the Hood

We've just been plugging away at a typical week lately. Although, we are now officially without our beloved sitter, Lyndsey, boo! But, we're super happy for her for finding a full time kindergarten teaching position. I think she'll do great.

So yeah, I'm juggling a lot of things, but the boys will be in school for 3 afternoons a week starting in two little weeks, so that should help cut down my late work-nights a little bit (I can't wait). We have a meeting set up with the boy's new teacher and to see the classroom next week Thursday, so that will be all settled soon as well.

I finally have the boy's Genetic Specialist appointment set, and it's for November 1. Between Oct 1 and Nov 1, the boys have TONS of appointments between hearing, vision, dental, orthotics, flu vaccine, genetics and of course the weekly chiro and feeding therapy. I will be glad to have that all done and over with. So much running! And I still haven't heard back from the Child Development Center, but I suspect that appointment will be set after the holidays.

We'll try to soak up these last few summer days...

Monday, August 20, 2012

The Good, The Decent and a Bee Sting

The Good news is that Jax does not need a cast on his foot, or even his splint anymore. The Orthopedist said that the injury he had was fine to just use the splint for a week. I was glad to throw that smelly thing away! The doctor can't say for sure if Jax's braces were the culprit to his foot injury, but he doesn't think they fit well regardless, so he advised me to keep them off him until a new pair could be fit. He also is under the assumption that if a child can walk, regardless of pronation, that sometimes braces do more harm than good. Then he told me to not get him in trouble... so uh... ok. I'm supposed to do what with that info?
So Jax will have to go without for the time being and thankfully he starts up physical therapy with school in two weeks. He was quite the happy little elf running around like a free man today.

The Decent news is that Jax gained 9oz over the past 7 weeks despite having a stomach bug and a few other hiccups. That's just over a half pound gain, so he's up to 25.9 lbs. This says that eating 70% of his food by mouth is working, but it does still tell us that he NEEDS that can of formula by tube at night to actually gain weight. I can't push too much more food on him yet, so it really is just a waiting game until his body is ready to accept that much more volume by day. The dietitian suggested that Jax eat some puree snack in addition to his milk at snack time at school, which may help.

We worked on crumbs in Jax's mouth and his 'chew toy' a bit. He is really ready to learn how to chew and I think that would REALLY help his calorie-intake during the day. We need to get more aggressive with his therapy, so the therapist at the hospital is contacting Mr Nick (our private therapist who Jax sees each week) to work out a plan to really start moving forward with that. If Jax can consume just 8 more ounces during the day (which is 350 calories) he can wean off that night feed... it feels so close, yet so far at times.

Jax had his blood drawn after the Feeding Clinic to test for his immunization tithers. We need to see if he held on to the last round he was given 6 weeks ago. If he did, we can be done with worrying about that, and hopefully he'll have a better defense to pneumonia (in addition to his better preventative inhaler he takes daily). If it comes back showing a resistance again, then Jax will have to see the Immunologist and we're looking at some big issues. Seriously... let's not have "issues", so cross your fingers for us please.

Aaaaand for the Bee Sting. After a long day of appointments, I let the kids run around in the yard before dinner. The neighbor's nanny came over with the kids and they were all bouncing off each other having fun. Then Kate comes running around the house telling me Brady was stung by a bee in the front yard and I can hear him screaming. She said she saw it land on him and she got scared and he didn't know better, so he touched it.
I ran Brady in the house and the nanny kept Jax and the kids outside. Neither of the boys have ever been stung, so I wanted to make sure he wasn't super allergic. I pulled his shirt up to look at his chest for signs of breathing distress, and there was none. Jason and I are both allergic, but typically just the "gets really swollen" kind of allergic, and if not stung on the face or neck, no trip for a steroid shot is needed (although when Jason and I were dating, he had to do just that after his entire face and neck swelled up!).
So I called Nana Janice for medical advice. She had me ice off and on every 15 minutes and apply antibacterial ointment. Since the area stayed in control, I felt he was fine. I gave him a little Benadryl shortly after at bedtime to help him sleep and keep the area a bit less tender. Poor Big B, he was SO upset and whimpered like a kitten.

Jax kept saying BOO BOO and pointing to Brady's sting and his own Band-Aid on his arm from his blood draw. My poor boys. I may break our rule and get them some small toys at the store tomorrow! I hate seeing them in physical pain!

Brady and his boo boo

Sunday, August 19, 2012

We finally have a Mumma!!!

Jaxon is saying it! We thought he said it randomly a few times over the past couple days, but each time we'd have him repeat himself, he'd say the typical "Baba" since he replaces B's for M's. He's now saying it often, yay! We noticed that when he was whiny or not thinking about it, it would come out as Mumma (not quite the perfect Mama yet) but then he would revert back quickly to his B's. Now if he thinks for a moment, he says it and at times he'll say it A LOT! Talk about melting this mom's heart. It came at the perfect time and I couldn't be happier. Once my Big B says it, I will be complete.

I took Jax to the store to get school supplies today and Brady went with Jason to the gym (his splint on his foot bought him a date with me) and since Jax had to stay in the cart, it was a GREAT shopping trip. He and I chatted through the whole store and he repeatedly said, "toys mumma, PEEEASE" which made my smile! We went to the toy area where Jax grabbed an Iron Man figure and he played with him while I finished shopping. He then put him to bed back on the shelf before we left. How long will the boys believe me that the toys "sleep" at the store and that's why they don't ever come home with us?? So far, so good ;)

We have a very busy day tomorrow with the Orthopedic check up for the foot and then later in the day a Feeding Team follow up for weight/diet. I'll update with hopeful good news tomorrow.

Here's a peek at 5 minutes of our Sunday morning in the house trying to sound out mmma-mmma! (The last minute is the sweetest...)

Wednesday, August 15, 2012

Our elf fractured his foot

Yes, I'm sure by the title you can tell we've had some even more chaotic days. Jaxon has a stress fracture on/in his foot and we have noooo idea how he did it. He woke up limping yesterday morning, so I called our doctor's office for guidance. We weren't sure if it was an injury (no apparent signs) or an issue with his orthotics. Jax has been telling us his right foot hurts for a few weeks now, but that is the foot where his brace wasn't fitting correctly, so we assumed it was his brace. He will ask for us to take his shoe and brace off and as soon as we do, he seemed happy. Well, the doc is thinking he hurt it awhile ago, and then must've injured it further on Monday - hence he woke up limping on Tuesday. The boys love to wrestle at bedtime, so maybe that pushed it over the edge. It's his right foot, which is his weaker side, so it's prone to injury easier - which makes sense.

We were in the ER for about 5 hours yesterday doing XRays and all the other fun things of entertaining two four year olds in a small room by myself. They actually weren't too bad and everyone stayed decently content.
Jason was home this afternoon, so he came with me to the pediatrician follow up to review Jax's foot. She confirmed her opinion of the slight fracture and Jax has to keep his splint on (more like a removable cast) until we see the Orthopedist on Monday. Let's hope that Jax won't need a full cast set! Jax also has a feeding team follow up that afternoon too, so busy day!

It was nice to have a follow up talk with Dr H again about further testing for the boys and for Jason to be there too. Dr H has contacted the Genetics office at Children's Hospital and the clinic agreed they'd like to see the boys. I called to register the boys today and I'm supposed to be getting a phone call back in the next two days to schedule them for whichever specific Genetics area of expertise they feel is the best fit given the records our doctor gave them. Dr H said to expect a three month wait, so hopefully they call soon to get that set up.

The same will go for the Child Development Center once I get their paperwork and send it back in for scheduling. Dr H said it is a looong wait, so I'd really just like to get scheduled for all of this and file it way until November or December.

We've been given a friendly warning about how much paperwork we'll be filling out and what the Genetics appointment will be like. Apparently the specialist will study every inch of OUR bodies and faces in addition to the boys, and more than likely there will be chromosomal testing done and who knows from there. I guess we'll be finding out...

So send Jax-man some quick healing-vibes (and me some anti-anxiety vibes) please! I hate seeing him crawl around, but of course he keeps that smile!

I told Jax to show his boo boo and he did this...

Yup, they just don't stop wrestling... even with a splint on.

The neighbor kids pushed Jax around in a stroller to include him - too sweet!

Monday, August 13, 2012

This was a tough post to write.

I found these photos on my phone and think they're hilarious. All of these college mascots were doing the valet parking at Children's Hospital a few weeks ago when the boys had their Urology appointment. You can imagine how outrageously EXCITED the boys were to give high fives and hugs to all these random characters. What a cute and random treat for the kids!

So I thought I'd start this blog with some cuteness before getting all serious-like on all of you.

There have been a few discussions over the past couple of weeks since the boy's physicals and all of their checkups that they'll be getting between Aug and Oct. Apparently after the wellness checkup, the pediatrician (I'll refer to her as Dr H) decided she wanted to consult the boy's old developmental doctor from the hospital (from the NICU follow ups) to discuss this whole business of Speech Apraxia. Since it's a neurologically based disorder, Dr H wanted to make sure she had the boys covered medically to support them. Well, the doctor from the hospital (who remembers the boys fondly) said she would like the boys to have much more intensive speech therapy if Apraxia is the case. Dr H was pretty upset to see that Brady had lost his private speech sessions from insurance.

So... then the two doctors got to talking about the boy's overall development. Some of the challenges they still have, some that are better, and some that aren't. From this discussion, Dr H realized that when and if a new doctor reviews the boy's medical/developmental journey - there seems to a missing diagnosis for the global issues. Now that they're four, and there are so many apparent "issues", typically further testing is pursued since "prematurity" shouldn't be the reason anymore. She said this to us during the appointment when referring to the boys inability to be on the size charts. I brushed it off at the time.

While this was going on, I myself found the question "so, what's their diagnosis?" from medical staff meeting the boys for the first time. I didn't go into details about the Urologist specialist, but he had quite the concerned "scientific" pondering on his face when he found out that neither of the boys know how to urinate on command. Typically late-potty training is a battle of wills, where this literally seems to almost be a motor dysfunction. Like the brain telling the mouth how to talk, or to eat... see the similarity? He was particularly interested to see Jax's g-tube and braces and then of course.... the great babble came out of Brady's mouth.  Let's just say, the end of the conversation was "you need to talk with your doctor about further testing".


Yes, how interesting was it that I called Dr H to discuss this, as she was calling me.. to discuss "this". She admitted to overlooking a global cause for the boy's development struggles, because like most people who know the boys - we're all just so happy and excited to champion them on with any new development. And honestly, there were a lot of medical necessities going on for a good part of each year. But now that they're four years old, it's becoming quite apparent that there are some issues we need to look into. Basically... a reason why the boys are still so behind, even given the great strides.

Dr H believes the boys may have a genetic disorder or something along the lines of mild CP. It has taken me 10 days to be able to write that out and sound matter of factually, so please bear with me. We are starting the journey of specialists, and we may or may not get an answer. I'm not sure which scares us more. The good news is, whatever "it" is, it doesn't change anything except getting the boys more help. They are still the sweet, super cool kids that they are.

Hey, we'd love to just continue believing that all these struggles are just a "bad start" and it will all be gone sooner or later, but the fact of the matter is... it might not. Our kids can't talk to other kids. Jax can a little bit, but Brady can't even tell anyone his name. Or my name - or anyone else's for that matter. He can't say his age, what color shirt he's wearing or even what shape you're holding up. Nothing. He has the expressive vocabulary of an 18 month old baby. Ouch. The truth hurts, but it is the truth. Jax is around a 24 month old.
There's obvious medical issues with Jax, but now it's coming down to the fact that he can not physically chew food - no matter how hard we've been trying. He's starting to regress the harder we push and he's starting to have a hard time swallowing now the more we push. Talking and eating shouldn't be so hard. There's the obvious low muscle tone, weak right side and braces for Jax, that shouldn't be lasting so long to get better.
Neither boy can properly kick, jump, balance or do things like cutting paper or holding a crayon.
All this after 3+ years of therapy. I guess their birth trauma, APGAR scores and continued poor growth may or may not be at play here too - there's so many things out there now that like to give me anxiety worrying about, so Google is off limits. I guess this is the time to rule things out and let the doctors have a look at it all.

I have paperwork being sent from the Child Development Center that once I send back (I'm sure it's everything just short of DNA requested) a plan will be set in place for a review and testing of the boys. They will most likely meet with a team set up of a Developmental Pediatrician, a Pediatric Psychologist and a Speech Pathologist. We'll see where we go from there, but I believe Dr H will be calling me again this week to see if she's decided to have the boys see a Geneticist simultaneously as well.
I can't imagine any of this process going quickly, but it has been started. I feel good about it some days and terrified and horrified other days. I spoke with the NICU followup nurse for a phone number today and she remembered the boys and how hard we were working on MAMA when she last saw them at the age of 2. I seriously sobbed. That poor woman felt so bad, and it really wasn't her fault, but it broke my heart. 

We know we have the most amazing little boys and are SO thankful they are as happy and healthy as they are given their tough road into the world. I'm working really hard at staying positive and knowing there are no quick answers if any.
So please bear with me. All we ever want to hear as parents are positive great things about our kid's health and development, so I'm sure you can imagine my aching heart. Jason and I just want what every parent wants - happy, healthy kids who don't have to struggle at the regular life things.
We still have tons of hope.

Wednesday, August 8, 2012

School News

I spoke with the boy's new teacher and she seems really great. We don't know who the therapists will be yet, but I'm hoping they are the same ones Jax had in his class last year. The boys will be going to an afternoon class rather than a morning class and it will be a bit over 3 hours this year. Their schedule is MWF 12:10-3:15 starting Sept 5, so I'm glad to be able to start planning for that.
I already see that the boy's scheduled eye exam conflicts with school at the end of October, so I called to reschedule and there's nothing available during their non-school-hours until December. Um... wow, I guess they'll keep the October appointment and just be late that day!

I requested that Brady get an evaluation for PT and OT once the newness of the year settles down. I realized that he's never been evaluated for this since I always thought he was fine, but I guess that's comparing him to Jax. I've noticed his skills are behind other kids his age (scissor cutting, coloring, pencil holding) and then our chiropractor said that Brady's feet have been pronating out like Jax's and she can't see his arches when he stands, so I figured it would be good to just have some therapists give him a quick review in the fall to make sure he's on track.
I can't believe school starts back up in four short weeks already!


Jax with Matt

Batman and his sidekick

Sunday, August 5, 2012

Beer on a stick

Yup, it's State Fair time and the first thing we saw walking in past the carnival area... was Beer on a Stick. Gotta love Wisco...

We went late morning today and the first hour was a lot of fun. The boys got to pet cows and sheep and we had some fun treats. Then suddenly it got so incredibly crowded that it was non-enjoyable with two small children. We quickly ate lunch and got the boys on a couple rides as promised before leaving. It stormed yesterday and it was beautiful out today, so there were WAY more people than usual.

We relaxed at home and had some yard-time with the boys. It was a nice wrap-up to the week. I forgot to mention that I received a sad phone call from Jax's preschool teacher on Friday. She was shaken up and called to tell me she would not be the boy's teacher this fall. She has to stay at the current school to be a teacher-aide for some severely disabled children in kindergarten. She is in her last 2 years of teaching before retirement, so I know she was really looking forward to being with her "Early Childhood" kids for preschool and 4k and see them off to kindergarten. I told her how much I appreciated her last year and we were very sad to not have her anymore. She was in tears, and even waited a week to start calling in hopes she wouldn't cry. Awe... this makes me sad.

I also got a letter from Jax's medical supply company stating that they would no longer be providing pediatric enteral feeding (tube feeding) supplies. They are referring us out to another company where a nurse will be my contact. BOO! I've been talking to the same nurse every month for FOUR YEARS going through Jax's tube-feeding journey and ALL the different supplies. I mean... she's on our Christmas card list. I get very attached to the people who have been part of our team. It's hard to explain, but I'm really bummed about this and Jax's teacher. Ce la vie, I know...

A farmer showing the boys his cows!

Love them sheep!

Cookie dough dipped in chocolate and sprinkles... on a stick of course!

Jax and Jason on a slide (sorry for the blur)

Patiently waiting for Daddy to get a few more ride tickets...

Friday, August 3, 2012

NO surgery needed, yay!

The boys had their Urology appointment today and it turns out that they most likely do not need surgery or a procedure to fix anything. The doctor doesn't think they have Meatal Stenosis, but rather a very mild form of Hypospadias (no worries, the boys don't look anything near the photo in that link). This makes more sense why both boys would have this, since it's in their genetic makeup. Apparently the urethra goes forward and stops at a dimple, then veers down to a hole directly below it. Since the boys each look fine cosmetically, it would only have to be repaired if there were a mechanical disfunction.
We need to watch for the boys to urinate outside their diapers and make sure there aren't any "double streams" happening. If they look like they're urinating in one normal straight stream, then they are fine and no one will most likely ever notice it. Hmm, make them stand in the bath and talk about pee? How do we do this? Although, I'm very relieved and was getting anxious at the thought of them needing anything corrected and causing them pain!

 We also paid a visit to the Orthopedist on Thursday afternoon to have Jax's braces looked at. He has definitely grown out of his right brace and the doc said he needs new braces ASAP, but... insurance doesn't cover a new pair until October (every 2 years), and yes, they are mui expensive. So the doc made some adjustments to the brace and even put brand new straps on both pair. He put an insert on the top for comfort in hopes that it will do the job until we can order a new pair in October. So yes, we have to go back for measurements in two months and re-start the whole process - I hope the current pair holds out!

Any bets on how long it takes us to lose the comfort insert?