Getting his groove back :)

Whew, it's been a hard go the last few weeks with Mason going through upper respiratory and urinary infections ... 3 seizures, and some temporary setbacks especially in the "using his voice" department, but at least right now he seems to be on the other side (here's hoping!!)

The last two days he has better tolerated near-full-strength feeds (yay!!) and has wanted to sit and play longer. His nerves are still on edge from the seizure activity as he keeps going into yawning fits and getting his blotchy rash when he is stressed or exercising (trying to sit, doing therapy, etc). But, at least he is back to trying! :D

I will try anything if Snoopy will sing and flap his ears at me!

I'm mostly back to my silly self!

But all this sitting is stressing me out, Mom!

 So, overall things are looking up! His breathing is tremendously improved (we tried NAC when he had junky chest/wheezing and we haven't needed the steroids! Thank You God!) We will be getting some amino acid testing done in the near future to make sure his body is handling protein okay (in the past he has spaced out/gotten very weak when eating solids, and seems to do worse seizure wise and congestion wise on whole-protein formula and retches more when we try to concentrate it.) We are optimistic this isn't the problem for him since they checked some of it on his newborn metabolic panel, but because that missed his thyroid condition, we are not going to assume anything.

In other news, Mason got his hearing aid loaners today! It is already quite obvious the difference in his hearing - the poor guy jumps a mile just when I make a kiss sound (one of his favorite sounds in the past), or say, "yay Mason!" the way I usually do or just little odd noises he would totally disregard in the past (movement of chairs, Micah playing with toys, etc). It is so encouraging though because just in the few hours he had them on today at audiology and here at home, he has been a chatterbox, experimenting with his voice and seeing what happens when he tries different sounds! We are praying this makes a huge difference in his babbling (or lack thereof) and eventually give him what he needs to be able to talk!! :D

Do you like my new hearing aids? I got blue for my first pair!

Did that sound come outta ME? Let me try that again....

Wow! This is cool!

HOORAY for hearing! :) Thank You God for ears, and for allowing them some help to work better!

Happy ending to 2011, tough start to 2012

I know I'm way behind so I'll try to give you the reader's digest of the last several weeks. Overall it has been very exciting until this week...

Starting mid-November Mason had 6-7 weeks FREE of apparent sickness (no congestion at all!!) after starting his home infusions of antibody IgG for his immune system! This was a HUGE blessing, and he made some awesome cognitive strides during this time including...

*starting to use his hands on his own! (before this time he would not voluntarily touch anything besides his Mickey Mouse lovey). He'd started exploring and touching and hitting things just for fun, to play! It was great!! Here he is playing with his musical garden...

*Finding his voice!! Up til this point he hadn't "babbled" only grunted, cried, "roared", etc. One day we were trying to teach him to do the sign "more" during vision therapy and not only did he do his own version of the sign, he also started making a loud squeal that he used consistently to mean "more"! Here he does "Gingerbread Man" game with Grammy where he really took off doing "more" and then playing with his new sound activated "Jumpy Crab."
 
 

*We got a Kindle Fire for Christmas to help me have an electronic record of his health for the doctors, and for mason in physical therapy and vision therapy and overall speech (much cheaper than an iPad but just as effective for him!!) We show him cause/effect apps like "Peekaboo Barn," "Gravity Storm" (lots of lights for him to track/touch), and "Kid Paint" -

Here is his first piece of art from it (yes, a budding Picasso - he did all that totally by himself, no one directed his hands at all, by wiping his own fingers, hands, elbows or head across the screen! Every mark represents a unique movement across the screen.) He also learned how to get toy coins into a piggy bank with his head too, in a very controlled way :) Here he is watching his personalized youtube app on the kindle fire - a string of baby babbling videos...as you can see it's very motivating for tummy time--look at him lift that head high to see those talking babies!!

 -

*He played ball with us! If we sat him in his big bumbo chair and we said "kick kick kick" he would haul back both feet and kick it to us!! He would squeal in glee over this game ... later, as I was helping him open a new talking soccer ball he got for Christmas I told him it was a ball to kick, and he started vigorously doing the "more" sign, squealing for more and kicking his feet - before it was even out of the box! He just knew that's what was coming! He also squeals for "more" if we stop doing something he's enjoying - singing a song, playing a game with him or sharing a fun toy :) Christmas itself was a huge blessing to have my mom, dad and sister in town and to have Mason and Micah healthy for that entire visit!! :D He wasn't happy at all about his gifts either ... ;)

We had a great trip to see family in KC too and we were all spoiled all over again there!

 But as we got ready for our trip to KC, Mason started to get a bit under the weather. His wet diapers started smelling strong and he was getting congested like he was getting sick with a cold. His feedings were getting worse (not that he was tolerating them well even when he was "well"). Not to mention all the "glitches" with his food (the GI nurse called in the wrong formula without DHA) and neuro called in a refill of his seizure meds but accidentally put him back on the name brand Keppra vs generic...and yes, there are differences in preservatives, etc. The slightest change in things seem to throw him for a loop...so this was a huge change for one week - double infection (UTI/URI), new formula, new meds, etc. By New Year's Day Micah got sick with a 103 fever and virus that seemed to come and go pretty quick for him although he has lingering sinus issues. But Mason went way downhill over the next week.

Yesterday he had a seizure (the first since August) and has been diagnosed w/ e. coli UTI :( The first antibiotic (Septra) didn't help and he got worse (blood in his drool/runny nose plus very weak); after the culture came back last night they realized it was a resistant strain so now he is on nitroforantoin ....  but he had another big seizure after his 4th dose of that. So something is not agreeing...either the infection isn't getting better, he's having a problem with antibiotics, his weight has dropped so much that his body is perceiving that his Keppra has increased, or he is not dealing with the change to the name brand Keppra or non DHA formula. So many factors...or all of the above. Pray we can get into a good groove because after his first seizure it took him several hours to re-find his voice. He got it back but it took awhile. Today his seizure was worse and he actually had shaking with it (usually he just gets stiff, tonic type). And he has not been himself since 4 pm. Please pray with us that the new medicine really starts helping soon and doesn't cause further harm so we can avoid the hospital (debating whether to go tonight as he is in bad shape but fearful that it could be more harmful as he is so affected by stress which is guaranteed there) and that we can get his formula and feeds back on track so he can get back to all his exciting progress ...

"Why are you so downcast, oh my soul? Why so disturbed within me? 

Put your hope in God, for I will yet praise Him, my Savior and my God." Ps. 42:11

If grace is an ocean, we’re all sinking

There are really no words to explain how blessed we are.  Sometimes I just have to sit down and literally get them down in print to see the "bigness" of it all. It's like how tiny Mason looks compared to how huge the beautiful tree is next to him at the hospital. Here is just the tip of the iceberg of why we are so, so overwhelmed with God's goodness this Thanksgiving season.

*PARENTS

I cannot think how it could be possible to be any more blessed than we are to have the parents we do. The ways that they have poured out love to us and what they have put up with to help us ... there is just no adequate way to say thank you. The meals you have prepared, the groceries bought, the laundry done, the hours of playing cars with Micah, the miles of wear on your cars (and the train) burning up the roads back and forth, and chauffeuring, the help with projects, the things you have learned to do for Mason, the stress you've endured, the risk you put yourself at just to come with all the illness constantly here, the selflessness and generosity of your whole lives toward us serving in any way you can... for all you have done and are always doing, and most of all for your hearts living out God's love in front of us...THANK YOU THANK YOU, we could never say it or show it enough but .. THANK YOU with every fiber of our being, we are so grateful for you and we LOVE YOU SO MUCH!!

*INFUSIONS

Happy boy playing with his steering wheel! Kicking it on and off by himself! :)

This month Mason started getting infusions where we literally pump a healthy person's antibodies into him for 78 minutes every Tuesday night so he hopefully won't get sick with severe infections so much. It has been wonderful for him to be off antibiotics! He is so much more content! He has started exploring SO much more with his hands and feet as if his nervous system is calming down some! The screaming rash attacks have been coming far less often since he hasn't been so stressed with sickness! He has had one cold type illness since we started him on them, and he sometimes seems somewhat weak or nauseous the next day after the infusion, but even the cold was SO much less severe than viruses in the past. It was like a "normal" baby cold if there is such a thing!! We are also blessed that at least right now, Mason does not seem to be upset at all by us having to poke him with a needle and tape it in for that long. And, the immune globulin infusions are unbelievably expensive but our insurance has covered them 100%! Thank You God!

*WEANING SEIZURE MEDS

We are down to 1.7 mLs of Keppra twice a day instead of 2 mLs 2x a day. Mason hasn't had any seizures since August even with the wean and he is now tolerating LOTS more oral stimulation without aversions. He isn't eating yet but this aversion issue to anything touching inside his mouth was something we had to work past before we could hope for good eating and ... he is so much closer!! We put a rubber baby finger toothbrush over a spinning child's toothbrush and he thinks it's hilarious to feel the buzzing in his mouth :)

*GAIT TRAINER

At Mason's last NICU follow up we told the PT assessing him that we were working toward trying to get insurance to help us buy Mason a gait trainer since he got so excited over a baby walker but was too tall to use it anymore. We were expecting a long wait before anything actually happened since such purchases can take months and might not even be covered. But...the next thing that happened just floored us. This amazing PT said to me, "I have one he can have that's just his size!!" HAVE?? As in, for free?? These things can be hundreds to thousands of dollars! And she was giving it to him to use for however long he needs it!! No waiting for insurance or funding to come through, no wondering if it will even be possible...here it is, to use and enjoy, already!! GOD IS SOOO GOOD, thank You Lord for putting us in the path of such a sweet spirit with a servant's heart! We are SO grateful!! This is what hope looks like... :D

 

 I could go on and on...but for the sake of my readers who know I get way long winded I'll leave it at this for now... thank You thank You thank You to a God who...

...Loves like a hurricane, I am a tree
Bending beneath the weight of His wind and mercy...

When all of a sudden
I am unaware of these afflictions eclipsed by glory
I realize just how beautiful you are
And how great your affections are for me

And oh, how He loves us so...

We are His portion, and He is our prize
Drawn to redemption by the grace in His eyes

If grace is an ocean, we’re all sinking...

So Heaven meets Earth like a sloppy, wet kiss
And my heart turns violently inside of my chest
I don’t have time to maintain these regrets
When I think about the way

He love us
Oh, how He loves us

How He loves us so

by David Crowder Band

http://www.youtube.com/watch?v=_n6EkKMTwHUhttp://www.youtube.com/watch?v=_n6EkKMTwHU

Presenting...

The Ice Cream Man, and an IGG Antibody (Immune Globulin G aka "I GET GERMS!")

Watch out germs, here comes one scary antibody to wipe you out! His tummy may look full but there's plenty room for more!! (We hope he's tagging for destruction all the ones we've been harassed by this month!!)

Don't even THINK about giving HIM any trouble...

Off duty...

Long tunnel...maybe a glimmer of light... :)

tAlthough the month-long Plague of 2011 is still going strong (I have ear infection, UTI and stomach bug, Brian had the chills and stomach trouble this week and Mason and MJ are not totally well from sinus/stomach ick) - there are signs we may be getting close (I hope!)

Mason is tolerating his feeds better and smiling a little more between. He is 2 lbs lighter but still doing his supported sitting and still a pro at tummy to back rolls - just getting tired quicker.

We had an immunology evaluation yesterday and it was determined he needs immune globulin replacement. This I dread in some ways (we have to be taught to do 2+ hour sessions of  Hizentra infusion shots over a pump weekly for undetermined period of time -this is a link that teaches us how). A nurse will help us get familiar with this at home. Please pray that there are no adverse events and that it does not distress Mason. Pray it does what we all are hoping - that it gives him a huge health boost both for his frequent illness and his nervous system issues. Pray for Micah to stay well too, as Mason's immunologist feels that although Micah responded well to his Pneumovax shot at one month check, he may very well have lost that protection since he has another sinus infection.

He also does feel that Mason's rash is probably "vasomotor instability" (autonomic/nervous system attacks) if not responsive to claritan (we'll give it a week on that). We will discuss this problem with neurology in 2 weeks.

Another thing I am checking into is to see if genetics can help us get him on anti-oxidants (especially NAC, N-acetyl-cysteine). I want to try that because he is missing the GGT6 gene (codes for enzyme that's important to glutathione homeostasis--this helps your body deal with stress and toxic damage/free radicals), so we are concerned he may not be able to handle oxidative stress from toxins as well as he should; since his worst crises seem to relate to medications (narcotics/seizure meds/sedation/antibiotics)  and illness we want him to have as much help on board as we can.  NAC can correct GGT deficiency, helps immune function and helps prevent free radical damage to nerves, builds connective tissue (we need all the help we can get with that too for loose joints and reflux issues) and may be helpful in cystinosis for whatever that's worth (the gene for which is extremely near to our deletion - although it's unlikely that's a problem it can cause need for extra hydration/thirst, photosensitivity (huge with both boys), thyroid, nerve and insulin issues (all issues in our family).

Thank you for praying us through this, it is pretty tough right now since we all feel bad and very exhausted but looking forward to some positive change coming soon!

PSALM 91