{Thirty-one} My First Roadtrip

My parents were so excited about taking us on vacation... an entire week of nothing to do but walk, eat and play. But then mumma wasn’t feeling good (and was cranky for other reasons) for the first few days. And then I got really ill. I was puking and pooping for a couple of days. I almost had to go to the hospital and I wrecked half of my wardrobe. The weather was gloomy, windy and rainy too. Mumma was very sad but we made the most of it. I, of course, was still jolly and having fun despite my belly and constant puking issues. Dada took me for a lot of walks between rain storms. Good thing we were in a nice house… complete with a washer and dryer because we used it. A lot. Like... a lot a lot.

We also celebrated my seven month birthday! I am so strong now. I want to eat real food with my two big teeth but for some reason, my units haven’t given me any real food yet. I hope they do soon. I’ve been sitting up unassisted for a couple of weeks now too. I can also get around pretty good scooting on my belly. However, I seem to always be in reverse. Mumma holds out her hands and I can pull myself up too. I like being tall. Standing is cool.

{Thirty} Healthy?

I have finally been feeling better. Can breathe better. Can laugh better. And the snot seems to be under control. Sort of. Physical therapy has been kicking my butt too. I’m looking forward to a week off for vacation and then maybe they’ll cut me loose. I don’t think my neck is an issue anymore. My head is still pretty misshapen and it may just stay that way. It has improved but I just hope mumma doesn’t regret not getting me a helmet.

We’ve just been gearing up for my first road trip otherwise. And it was fun! I like car rides and we got here safely! I slept for half of it and mumma played with Brayden and I for the other half. Dada says its my first vacation of many to come. Good stuff.

{Twenty-nine} Back to the doc’s office

Another virus hit me last week. Once my ped confirmed, it was back to the pulmonary specialist we go. Since I was having difficulty breathing, he could hear me a little better and the problem seems to be on the inhale. That means it’s stridor due to possible epiglottis (the flap at the top of the esophagus) problems and not asthma. But whatever you do, do not look up troubles with the epiglottis…everything on the internet on the subject says something about death or tumors or deadly infections. Stupid internet. So anyway, I need to go get another neck x-ray in six weeks and report back for updates.

{Twenty-eight} Food & Happiness

I eat. I play. I eat. I laugh. I roll. I eat. I like to eat. Dada just bought me some new foods to try. They involve oatmeal and peaches and dinner veggie blends…. I like them all. I like food. Since I have teeth, I am waiting patiently for the finger foods. Did I mention I like food? I weighed in at 19 lbs 6 oz last week.

Sleeping is nice too. I sleep pretty good at night when I’m not sick. School is going well. As is spending time with both my Grandma’s and my brothers. I’m a pretty happy boy.

{Twenty-seven} Six Months

It’s good to be alive. All six months of it! My parents seem so happy that I am here and part of their lives. Brayden seems to like having me around too. Mumma and dada love me so much... we hug and kiss and giggle and tickle whenever we can. My mom says we’d do that even more if she didn’t have to work. The only downside of celebrating my six month birthday is that I have to have shots this week. I don’t like those.

I like getting dressed now too. Now that I know how to help (sitting up and pushing my arms through the holes).

And... I went swimming for the first time. I love bath's so mumma predicted I would like the water like my big bro. Pappo Frank also keeps the pool at a nice bath water temp.

{Twenty-six} More More More

more  \ˈmȯr\ adjective

1 : greater in amount, number, or size

2 : extra or additional

More PT. More rolling. More bottles. More drool. More baths. More fun. More kisses (yes, I give good ones). A lot more kisses. More giggles. More soggy bibs. More hugs. More appointments. More laughter. More pictures. More tickles. More foods. More snuggles. More neck exercises. More sitting up. More sleep. More diapers. More playing. More smiles. More life. More love.

{Extra Post} Health Recap - 6 mos

December 2nd - receive a phone call regarding cystic fibrosis (10 days old); newborn blood screening had a red flag so they researched/more testing and discovered a CF gene; more testing needed

December 17th - visit children's hospital for CF sweat test; results negative, has the CF mutation gene which means he needs genetic counseling/testing before having his own children (Brayden will also need genetic counseling and testing before having children)

January 27th - two month check up/vaccines, possible craniosynostosis (corrected with skull surgery), need a skull x-ray

February 2nd - skull x-ray at hospital, he did not like that any

February 24th - croup; miss first day of school 25^th (first 2 wks of school)

March 1st - cancel skull x-ray follow up appointment due to illness

March 24th - still sick weeks later, still jolly, still SNOTTY, check for RSV (negative, probably had it but didn’t get tested until after the fact)

March 29th - four month check up/vaccines, advised to follow up on skull/head shape; it is not cranial stenosis after reviewing x-ray, no surgery needed, but drastic plagiocephaly/flat head which can put pressure at spots on the brain

April 13th - met with specialist for possible need of a helmet to fix skull shape/pressure issues, schedule head scan; he discovers congenial torticollis which is shortening or tightness of the sternocleidomastoid muscle, could make his head tilt permanently and/or cause numerous learning disabilities if not treated

April 14th - STILL sick (our diagnosis: croup to RSV to a cold 4/2, CF is on my mind), doc check-up for pneumonia or bronchitis, lungs sound clear despite the phlegm, coughing , choking and runny nose; swab comes back positive for enterovirus and/or rhinovirus

April 15th - doctor visit to check inflammation/infection of his dukey, skin split where it should be healed from circumcision, infection cleared up in 2 days w/neosporin

April 25th - skull scan (technology is amazing) with one of only two smartscans in Michigan; no pressure on his brain, just physical appearance issues so it is up to us to decide about the helmet; christian’s results are 8.9cm difference (10cm is considered bad); we can redo scan in 4-6 wks to help us with decision on helmet; in most cases, pressure on the back of the head creating a flat spot, pushes to the other side but christian is in a very small percentage of where pressure is pushing straight forward deforming his face

April 27th - physical therapy evaluation which declares RIGHT torticollis (not left as originally diagnosed); his symptoms aren't text book and a little different than the "norm", his torticollis is linked to his head shape issues but is NOT the actual cause (could actually be complete opposite)

April 28th - back to the doctors to check on lungs again since he still has breathing issues after 9 wks (last check up was 2 wks prior), swab him again for 4 other possible virus'; can't pinpoint the cause so we were directed that we may need to follow-up with a pulmonary doctor and revisit cystic fibrosis concerns; given antibiotics for a small ear infection, steroids and breathing treatments

April 29th - talk to the genetics department at children's hospital, CF test results can be wrong but it is rare; 2^nd opinion also suggested to watch him closely and follow up with pulmonologist so we wait and see

May 3rd - my bebe is feeling a bit better, ear/lung follow-up found water still on his ear and directed to continue with breathing treatments as needed; stopped steroids after two days at my own discretion

May 4th - start physical therapy sessions; twice a week mon/wed at 3:15, exercise and stretches should be done about 10x a day, PT could be 6 months up to a year

May 7th - Cranky, slightly feverish, snot faucet! = popped two teeth :D

May 9th/11th - physical therapy

May 13th - recheck on ear/lungs, still a little water buildup on ear but not enough for concern, lungs sound better but directed to proceed with pulmonary specialist appointment

May 16th/18th/23rd/25th/30th - physical therapy; figure out what exercises are most effective since we are having a hard time doing 10x a day

May 31st - Six month check-up/vaccines (didn’t happen yet)

June 1st - Pulmonary Doctor appointment (didn’t happen yet)

{Twenty-five} Drool

I eat EVERYTHING... Fingers (yours). Toys. Sheets. Toes (mine). Bibs. Bananas. Hair (mumma’s). Clothes. Sweet potatoes. Fingers (mine). Blankets. Socks (mine). Peas. And I also drool. Drool is cool.

Physical therapy is fun minus the part that Nicki makes me cry. I have survived four sessions to date and there is no end in sight for now. Hopefully everybody will fix me right up but mumma says it’s so hard to get my exercises in 10x a day but they’re trying. I like adventure and going places so PT doesn’t bother me. I’m a people person. A very jolly people person. Until they make me cry. Stupid neck muscle. Mumma is still unsure if I’m going to go get another head scan for my head.

The parental units were both so excited last week that I slept four 10hr nights in a row! Mom declared she finally felt human last week after these months of stress, worry and constant running. Add some sleep (for all of us) and we’re just happy as a clam/clams. I don’t know how happy a clam really is though. It’s just an expression I picked up.  

I also had one last lung and ear recheck on Friday and still have a little water on the ear but not enough to constitute more medicine since my 6 month appointment is coming up. A pulmonary doctor for my lungs is also in my future. So I’m still keeping pretty busy. I even sat up unassisted for the first time (just an hour ago). Liberating!