This blog is dedicated to my son, he is among the strongest, bravest souls I know, fighting the effects of Mitochondrial Disease. Through God's grace,I share our story,one that is lived day to day...some days I am given reasons to rejoice and other days are shattered by the effects of seizures and broken dreams.
At the end of the day I give it all to God, and place my precious Hudson in His hands, He who created him.
She finally got her birthday party last week...a small group of 6 girls, here at the house.
I am sad...my little girl is growing up...I didn't know she would be my last typical baby...I feel like I lost a lot of the fun stuff from ages 3-5 as I was bombarded with trying to make Hudson o.k.
I have lost and gained so much....all at once.
Hailey is gift.
She is all those *little girl* things when you think of a girl.
She has been working so hard to not suck her thumb.
In a way....I really don't care (except for the thought of the huge ortho bill that will linger in our future)
When I see her suck...I still see my baby...and I want to hold onto that.
I have pressured her to stop...just because the dentisit has told me she really needs to.
Deep down....could care less...other than I don't want her doing it in her teens!
The other day we were driving home from church and she was tired and it was a typical sucking thumb moment. I looked in my mirror and noticed she was in ready position...I asked if she was sucking her arm and she said "no...just smelling my arm."
She sucks her thumb and the other arm lays across her face and she smells it...weird, but just one of those things she has done since she started her thumb sucking.
I know I have said this beofore, but she is a great mommy and mommies helper!
She is a little nurses assistant...and she is a nurse.
I love her caring, mommy ways...and so does Hudson!
So my baby girl got her Wizard of Oz party, and her piniata with lots of candy, and the girls made shrinky dink oz charm bracelets. She deserved a great party. She has become so understnding and flexible because of Hudson. She never pitched a fit, or cried, or got angry because we had to postpose the party.
She was just happy to have the party, her pinata and her friends!
My mom has some friends visiting from Chicago that we have known a long time, They haven't visited us in about 10 years. They came on Monday and leave Thursday. I was invited to go out to Happy Hour at Anthony's and Fred stayed with Hudson and the other 2 after they were dropped off from a birthday party.
Well, normally, my kids would be up now and ready for school BUT....
I am feeling guilty to wake them...
Happy Hour turned into us closing the place DOWN!!!!!
We got home at 12:30 last night!!!!! (or I mean this morning)
Thankfully....
I popped two ibuprofen and went to bed. I have to work today. I gotta get those kids up.
What if they tell their teachers they are wiped because their mom was out all night...
Now that the weekend is over, I feel like I can breathe.....
I have so much to do in this house...
I shouldn't be on this computer...
it eats my time.
But...
Hudson is sleeping, and the house is quiet and it is good for me to get it out...
what stews in my mind.
I have to say...
this past week felt like a full on attack...
I just felt like the enemy was trying to chew me up and spit me out.
The timing of Hudson going into the hospital...
with Paul coming home and Hailey's birthday. (not like there is good timing for a hospital stay!)
We basically had one day...
Saturday.
Hailey's birthday.
I was so grateful we were home to celebrate...
BUT..
it was my one day home...
Paul had to leave to go back to Vegas on Sunday and so...
there were things we had to talk about...
things that are HUGELY stressful...
like coming up with 20% on this new town home...
and managing 2 homes at the same time...
mostly just the financial crud that comes along with any major purchase...
that eventually you have to talk about...
especially when the closing is the 15th of next month!
I am tired and weak.
I just feel it....especially over the weekend...
because I just felt like a good cry was the best medicine for my tired spirit...
and yet I held in as much as possible for the sake of my birthday girl.
The enemy was speaking lies to me...
speaking lies to Paul...
we both recognized by the time he was ready to fly back to Vegas.
I cried under my sunglasses the whole drive home from the airport.
My kids were fine this time around.
I am feeling a bit extra emotional...
but I have that one voice...
the voice of God...
telling me...
You are not alone...I am with you...
and I have another voice saying...
I can't do this anymore...I didn't sign up for this...my son is catastrophically ill...my husband works in Las Vegas...my finances are a huge stress-or, trying to purchase a second home and pay for 2 households on 1 pay check, when do I get some relief? How do I keep going?
It's when I look in the eyes of my 3 H's....
I know I must keep going...
I know God will see me through...
He is walking every step with me...
In a way...
He is enabling me with the kind of amazing strength he has given Hudson...
to fight secondary illness...
a simple cold can easily take his life...
yet he is here...
and God gives him this amazing strength to carry on...
and fight...
and be a testament to His amazing love, grace, and strength.
I see that is what He is doing for me too...
because, honestly?
When I look as a spectator on my life... He is the only way I am doing what I am doing...
I give Him the glory...
not me.
I have amazing people in my life.
I don't have a huge family, in fact...
we are pretty small.
My mom is my biggest cheerleader in all of this. She keeps me going.
My brother...I love him...he isn't around as much as he used to be, but he always calls, and I know he prays like mad for us.
Fred...a fathers love I have never known...I am so grateful to have him in my life.
With there day to day existence in my life...
it makes things so much more bare bale.
My mom and Fred gave me a gift over the past 2 weeks.
They did a mini-makeover on my bedroom.
What used to be a mish-mosh of whatever...
is now my own little warm and cozy room.
It looks beautiful...
they spent one entire weekend painting my room, and yesterday Fred put up new curtains and rod.
I love it!
It actually feels like a room I want to be in.
I have always put my time and energy into every other room in the house but mine...
because I put myself last on the list...
this was such a wonderful treat...
and gave me the "lift" I needed!
I should have done before and after pics...but I didn't, but anyone who has been here will see a huge difference!
I am glad I have the support from family...
they see me through....
each and every day...
As for Paul and I...
well....we had absolutely NO time together this last visit...
the stress of our current situation overshadowed time well spent, so...
I am going to try and fly out maybe next weekend and spend 2 days in Vegas...
just him and I...
Fred tells me to GO...
he and my mom will cover the 3 H's....
Are they great or what?
God has placed some very special people in my life.
I know He knows the "big picture" I trust in that and His provision in my life.
*************** A Picture Extravaganza......
This was the Sunday before heading to the E.R.
My mom and I took the kids bowling...can you tell they love it?
My mom brought the kids after school one day and I thought this was super cute...
Hailey was reading a book to Hudson...(she is totally into reading...it just clicks and she is reading so well!)
Birthday breakfast for my 6 year old!
(Is that the look of a teenager or what...oy vay!
6 going on 16!)
Hailey gets one present with breakfast which was a whole outfit, including necklace, and hat, from Justice For Girls...
she loved it, and wore it all day Sunday too! Thankfully she has to wear a uniform to school else she probably would be wearing it today too!
Hailey and "Unc-e" (my brother) Birthday dinner
SO SILLY!
Mommy and daddy got her a old-fashioned musical jewelry box with the ballerina inside, engraved with her name...she loved it!
I really wanted to shout out yesterday that we had answers to all our prayers...would you believe NOTHING happened yesterday? By evening I was fried.
I will try and briefly update what is going on...
I got a clearer picture from Dr. carter when he talked to me around 7 p.m.
He thought ENT had been in yesterday. I explained to him that 2 residents came by the day before, dumb and dumber, oooops, I didn't say that...I mean the 2 ENT docs looked at him and were completely baffled by Hudson, in my opinion. Dr. C sorta agreed with me re. the 2 and said they reported that his tonsils appeared large but did not think that the adenoids was an area of concern. Dr. Carter told me this is conflicting because the tonsil tissue is the same as the adenoid tissue, so typically if the tonsils are large, the adenoids will be large as well. His idea is to keep Hudson on the Augmentin for 6 weeks 2x per day then take him down to once per day. If his adenoids need to be removed, this wouldn't happen until the infection and illness is all cleared up. He gave me a better understanding what all of this looks like, as I was thinking it would be done while we were here.
He said that Dr. Manning would come and visit us today. He is "the" doc in ENT...and guess what....he came...along with the other 2 ding-dongs (sorry, just a bit frustrated)
So they woke me up at 7 a.m. to talk giving me 2 options...a nasal anibiotic that would be done on an ongoing basis and does not get absorbed by the body, or botox injections in the salivary glands. I explained at baseline Hudson is not a big drooler and my idea of a drooler is a kid that needs a bib because they saturate their clothes...that is not Hudson. I asked about the scope of the adenoids as Dr. C think there is a strong possiblity. Dr, manning thought it had ben done!?! No...I have been waiting for 2 days!!!! So he said we can do a scope or xray and he prefers the scope as they do it bed-side...great lets do this....then he says ok...maybe tonight or tomorrow!!!! I told him I won't be here....my plan is to get out of here today....so he says if I am getting discharged have ENT paged and they will do it before we leave. They walk out.
Seroius lack of communication here...so irritating!
So, i shower and in my head think I am going to prepare my day today to get the hell out of here...get all cleaned up and leave Hudson's room to get coffee and I see the doc that comes in every morning to go over his care. I asked if he was planning to come visit cuz I was headed for coffee and he said he was in and checked H out already. Hudson had blood drawn this morning and the gal, another ding-dong, had to poke him twice because she didn't draw enough and then it came back that it needed to be done again cuz it clotted, etc. He said the amonia levels are high and the p-lactyate levels are high which are metabolic/mito issues so Hudson had to be put back on iv fluids. He was taken off yesterday. I started feeling like my gung-ho attitude to get out of here started fading. He said he will need to talk to nuerology to find out where his levels need to be before Hudson can go home but he thought we were looking at Sat or Sunday!
When I called Paul and told him...the floodgates opened....he came home yesterday and I haven't even seen him and he leaves Sunday. Hailey's bday is Sat and party is suppose to be tomorrow and I haven't cancelled cuz I have no Ph#'s. I feel like I am going to dissapoint a very special little girl, who deserves the best birthday ever! I want to see my husband....I am tired of doing this alone. I want to be home, all of us together and this whole scenario just sucks!!!! I cried and Paul was so positive and said if we are not home by sat he will take her to breakfast and then come down and we will all be together in the hospital and maybe take her for dinner dwntwn Seattle. He made me feel better...a little anyways.
For now...I requested Hector to do the blood draw and was told he will be in at 11. Hector is amazing, quick and efficient...no double pokes with him!
I am praying the scope gets done TODAY and we get answers...YES he has enlargened adenoids...I need a AAAAHHH moment...where it all makes sense for doctors and me.
Positivity is leaving me...is it ok to sit and cry, or will they admit ME when they see me breaking down?? I am just hitting my max!
On another note...
I had a nice surprise visit from Dr. Saneto yesterday and Pam the day before.
Pam sat and talked with me at least 30-40 min. She is a Christian, so we sorta got off the medical talk and talked personal. I had never told her or Dr. S about Paul getting a promo and relocating to Vegas. We talked about the whole scenario and she never once made mention of being able to care for Hudson in neveda or making it work...she said what I know to be true....He HAS to be here, you are doing the right thing. She just felt sorry for how much i have on my plate. It is nice because I can talk about my faith, how I prayed through the issues and decisions and how God made things crystal clear in many ways how we need to handle this season of our lives. She was in aggreance 100%
Dr S came down and we talked seaizures and then we too got on a personal level when he mentioned that he heard Paul was working in Vegas. So I brieflly explained how we came to our decision and how God led me there. He listened and not once disagreed that Hudson needs to be cared for by him. He is so incredibly humble. I told him I don't mean to put him on a pedestal, but when I read that he is one of 50 in the country researching mito and then the ONLY one researching mito and the relation to epilepsy...I said it was like reading Hudson's name across the screen...that is Hudson...you are studying and researching exactly what Hudson suffers from...How can I remove him from such care??? He just nodded his head in agreeance.
So now they know...and I am glad...because I am sacraficing alot to make sure Hudson has the very best care, but there is nothing more precious than Hudson and my other 2 babes and I know God is walking me though this...even at the loneliest of times.
Please pray for things to back on the upward swing...a scope to be done TODAY...results that we are looking for...for me to get some family time with my kids and husband...the timing on all of this completely blows! Pray for my sweet Hailey....that in spite of this unexpected hospital stint...she will feel loved and special no matter when or how we celebrate her.
Thanks for your time and prayers...it means the world in this lonely little hole I am in...hospital are so depressing!
*just got back to the room...am told by the nurse Hudson tested positive for Rhino-Virus...which came back through the nasal swab when we were in the ER...now we are in isolation again!*
***********
UPDATE....
The scope has been done now. The adenoids appear normal size. He said the nasal cavity is infected so they will be adding on a nasal spray antibiotic given several times a day for 3 weeks. He said this may have been festering a long time and the combo of the 2 antibiotics will hopefully knock this out once and for all.
Hector came in afterwards and redid the blood draw. The gal hardened his vein so Hector even had a hard time getting the blood to draw. Between the 2 events, and all the kicking and screaming, Hudson is out cold...poor kid. After I was giving pressure to the draw site Hector grabbed his arm to bandage it and Hudson started screaming all over again...he thought he was getting another draw...he is so traumtized!
Now we wait for blood results. Best case we go home tomorrow. Oh and now I am told his site for his iv looks puffy and swollen! Poor,poor baby!
A wasted day.
One doc came in all day...Dr.Carter,to just see how Huds was doing and to let me know he should be seen today re. the adenoids...no one came until 6 p.m. today!
My guess...this doc had a full clinic day, came down to us at the end of his day,knew nothing of Hudsons history,didn't look at his chest x-ray, really...just seemed clueless!
He didn't even seem to be gung-ho to do the scope for his adenoids, or make it seem that it may be a strong possibility. Just fries me when doctors act clueless...FLIPPN FRUSTRATING!!!
Then 10 min later he brings in another clueless colleague...and it ends with possibly doing a x-ray of his profile and look at his adenoids that way, or possibly injecting botox in the mouth to numb an area where it would lessen secretions...at this point I was feeling too irritated to even get what he was saying...cuz botox and secretions didn't sit well with me.
When these docs are talking to him like he understands what they are saying...like..."O.k. Hudson, open your mouth for me." "Stick your tongue out Hudson"...
Really? Makes me think they have no idea who Hudson is...I wonder if they even skimmed his records...because doesn't know language...I wish, but come on...this seizure saturated,energy depleted baby boy barely smiles, and they think he understands their simple requests...puhleez...they could not convince me they read his chart before entering our room...FRUSTRATING!
At this point...I need all of you who believe in the power of prayer to pray that whatever they need to see to indicate adenoids...they see...because, you are so right Heidi...that would be simple and a clear answer and nothing is ever simple with MITO...and I crave SIMPLE!!!
So please...Lord...hear our prayers... For our dear sweet angel boy to have a simple, clear answer, such as the adenoids...I fear the antibiotics that were started today will once again bandage the source of the problem, and for Hudsons sake we need the source revealed.
I so appreciate your faithful prayers and love. Wednesday will bring answers and leave the frustration in the past...look for our answered prayers in my next post.
Long day...but happy I won't have another night like last night. Too scary being alone in this situation.
Things I have learned today...
*normal bloodwk
*NO RSV
*Chest Xray was taken showing similiar enlarge lymph tissue around heart. Dr. Carter (pulmonary)said not AS enlarged.
*Dr. Carter is requesting Eyes,Nose,Throat team
*Lungs clear
Tomorrow;
So far I know that Dr. Carter feels the ENT team should do a scope to look at his adnoids. It is his thought he could have enlargened/infected adnoids which could be the cause of our problem. It also causes snoring which Hudson does. He wants them to asess tomorrow.
They will likely put him back on augmentin tomorrow too.
I feel like I am on the verge of getting sick. Praying it is only symptoms of exhaustion and not illness. I have that funny feeling in my throat.
Will update tomorrow...thanks for all your support as it keeps me going as I trek through these long difficult days.
Last night was what I feared would happen.
Had I not stayed up all night with him....suctioning him, and caring for him he would have possibly suffocated on the mucous he was coughing up.
We spent the night coughing, suctionong, seizing....until 4:30 a.m. He was wheezing, like in Dec., and I gave him albuterol. I just think I was prepared to get him through the night and knew I had no choice but to stay up and make sure he was o.k.
I am sleepless and withered....but know I can't allow him to go on like this, or have another night like last night.
At one point I had wrapped my arms around him as he tried to sleep and all of the sudden his body started shaking as if he had the shivers. I turned my light on and held him and cried....I feared I may loose him....his breathing was off...the whole things was so scary....being all alone, dealing with this....made it so much more frightening.
I called Pam....she agreed....he needs to get to the E.R.
She said he will likely be admitted and will need I.V. fluids and we HAVE to get to the bottom of this never-ending cough/mucous.
I am praying all is revealed to these Doc's for them to figure out and get to the bottom of this.
I really don't know how Hudson can survive all of this....he amazes me!
Prayers needed for my other 2 H's....it is Hailey's bday week...I don't and can't think about that right now...but I know she will be very sad if we are not here....
Please keep us in prayer.....will post when I know where the day will lead us.
Wish I could say life has been quiet...nothing to report...
nope...can't say that...it's just the craziness of life, ya know?
No...you probably don't know...so where have I been while I have not been here?
I played...
"wife" last week for 5 days
chef to a very hungry home -cooked- meal- craving husband
nurse...as always...24 hours
mom to 3....24 hours again!
sleepless and tired.........cuz I am mom and nurse!
birthday planner....my baby girl turns 6 on the 20th!
tax preparer and filer....first time EVER! (Paul always took care of it!)
detective....trying to solve the mystery of the strange, tremor-throwing up, only at night-coughing crazed mucoused Hudson!
video-ographer....trying to prove and get my suspicions on tape...the tremors, the tonics...all I can say is when the camera is on Hudson is STUBBORN!
It has been seriously exhausting and the longer I stay away from blogging, the harder it is for me to come back.
It just takes to much time...
and that is unfortunate...
there is so much going on in this crazy household that to get my thoughts and days down in this blog....well, it seems overwhelming at times.
Time away makes it more overwhelming because it is never-ending.
Sitting at the computer...giving this blog that kind of time.....just seems impossible lately.
Makes me sad.
I appreciate the concern from fellow bloggers....and friends....who see me and know we still exist...but still worry.
I knew I was waaaay overdue, when my own mother made a comment the other day that I have not blogged in a very long time....
she sees and talks to me daily people....helloooo....apparently she gets clued in on my inner most feelings through this blog...I think she just likes reading what my heart is feeling....because she puts me on a mini pedestal and tells me how amazing she thinks I am....again....hellooo...I am her daughter!!!!
So....here I am.
This is where I have been.....
Playing wife..........
was GREAT!
I do think this time apart has grown us closer. He was very helpful with everything. He bought me flowers. He bought me my favorite bottle of wine. It feels so good when he is home. It is bitter sweet to see him go....
it is serving us well in many ways...but it is so hard to let go when things feels really good.
It hurts the heart.
I hate goodbye's....even for a week...I get all teary-eyed.
He will be back next Wednesday...so only one week this time. It has been 3 weeks prior to this last homecoming.
As I mentioned...our little girl turns 6 on Saturday, the 20th. Her party is Friday night...a PJ party. Hailey's 1 request....a pinata....and the Wizard of Oz party at our house. She is so excited!
HUDSON.....
really...where do I begin?
It has been crazy.
I never did call the mito nurse after my last post...but I did call her this last week.
I call the episodes I have been seeing/feeling tremors.
There was so much to tell her though....
besides these weirdo tremor things, Hudson has been throwing up every night for the last week.
There is no rhyme or reason. He doesn't throw up all day. It has been consistently the last feed of the night.
This is the reason for no sleep.
I am so paranoid. I stay up until midnight to give him a full 3 hours from his last feed. (I never used to have to do this)
then I feed him with his last 3 meds...B2, Leucovorin, and Lamictal.
Then I lay in bed and watch him on the monitor. (really not my idea of good reality t.v.)
Usually after 45 minutes or so I feel safe to call it a night...we are talking almost 1 a.m.
My biggest concern is that I fall asleep, don't hear him, and he chokes on his vomit and I awake to something I can't imagine dealing with...
it frightens me...
so I would rather be sleep deprived and know I am awake and ready to help him.
Many nights I am...and I run in his room as he is doing the deed, getting in there in time to lift and turn his head, vent him, change his jammies and bedding. Some nights I think 45 min. is enough time and minutes later I awaken to hearing him gag. There have been several nights I have curtailed the throwing up by venting his tummy as soon as I hear him. (already happened tonight as I was blogging)
He gets all full of saliva and his little tummy and body are doing the heaving motion and then it passes. I thank God for those nights. We have had about 4 nights in a row of just that.
Yet, it is still heartbreaking...to see him go through that...he gets all sweated up and then he passes out after almost throwing up.
Last night I think I sort of figured the mystery to some of this. I put Hudson to bed, then Hunter and then I heard Hudson. I went back in his room and he was having some sort of seizure where his legs were stiff and straightened and he was literally lifting his back and bottom up and off the mattress. When his body relaxed he went into the heaving mode. So this throwing up gig is not so much food related as it is this weird seizure...that I never see during the day....so crazy!
Yesterday I finally decided to try something different.
Typically Huds gets 6 4oz. bottles, which lands his last feed pretty late. I decided to give him 4-5oz. bottles and 1-4oz bottle as his last feed. So he is now getting 5 feeds instead of 6 which is making his last bottle around 9p.m. which is way more do-able for my neurotic behavior of having to watch him.
It worked well for me last night. Although I woke up at 2:30 a.m. to look at him on monitor and hear him breathe, and then at 4:30 a.m. .......my body/mind is just programmed!
I am sooooo sleep deprived.....and it's my own doing really!
Hudson is so good...even when he is awake, he is mostly quiet and just goes in and out of sleep.
Oh, which was my other concern when I spoke to Pam....Hudson typically has always crashed at night very easily......he hasn't been. He is clearly tired but his little body just won't allow him to shut down...it's bizarre. So if you watch him, his eyes are heavy, he looks like he is going to go into a deep sleep and then they pop open.....get heavy again, starts shutting them...pop open. Does this for hours. She says with all the seizure meds it should make him very sleepy, not the opposite. She had me take him up in melatonin, but I haven't seen a change.
Last but not least.......you won't believe this one.....cuz honestly?
I feel like I am loosing my mind....BUT.......
Hudson was on the Augmentin for 20 days...remember?
He has been off for about 15 days now.....and guess what????
The GUNK is back....full force!!!!
He is coughing, I am suctioning, it is GREENISH-YELLOW!!!!!!!!!
It is so unbelieveable to me......this morning when Hudson coughed and sneezed and blew a loogie out his mouth, I wiped it and took the cloth to my mom and asked her the color....what color is this....is this the color of infection or am I going flipping CRAZY?????????
Mom confirmed. She sees what I see. Thick, yellowish-green, pussy mucous. He is coughing a ton again. He sounds horrible.
When I called the pulmonology clinic and told the nurse what I am seeing, she called me later and basically said whatever the infection was should have been taken care of by a 20 day dosing of Augmentin....she made me feel like I am loosing my mind, like I am making it up that Hudson is once again coughing up this crap.
I fear we will wind up back in the hospital, like we did in December, if we don't figure this out.
It needs to get figured out.
It feel as if we had we taken a few steps in the right direction on the antibiotic...
and now we are several steps right back where we were.
I just can't believe what this baby goes through! It is unbelievable....not to mention the endless seizures, vomit, tremors, etc. I am just so tired of the suffering. I just can't imagine how long he has to exist like this. It is not fair for him to go through it. It is not fair, as his mother, to witness this day after day.
I spent all morning yesterday trying to get these tremor on tape, trying to get his strong tonics on tape...nothing! Hudson is so stubborn...wouldn't do it for the camera.
Eventually he did, when the camera was put away.
We have Dr. Saneto on Tuesday. I just want him to see it all, I need to get these recorded, and yet I am so tired of wasting my time doing nothing but staring at my son waiting for the monster to take over....
it is such a weird existence....
In the midst of all this I did turbo tax last week, in between the three kids homework, and making dinner and managing Hudson. I am still working Wednesdays and have just been asked to work an additional 2 Fridays a month.
I have been a total looser in the exercise area...because I am just too tired and fried....but have done my Saturdays. So all of you who thought that post a while back was encouraging, and were giving me kuddos....take it all back....cuz I am eating my words...got the big "L" on my forehead!
Another insane week ahead....Dr. Saneto, which is always a big appointment and all day,
Daddy comes home Wednesday, birthday prep all week...I am tired thinking about it!
Oh, I almost forgot....Paul made an offer on a townhome in Las Vegas and our offer was accepted!
So it looks like we will be home owners in Las Vegas very soon! Paul sent me over a ton of pics, and I think he did well. So I think by next month it will be ours! Kinda freaks me out! Life is just way crazy.......
O.k. let me re-phrase...MY life is totally crazy!!!!!!!
*************************
In attempt to catching a huge tonic, and the "tremors", I had gotten a lot of random video of Hudson, none of which was really what I wanted! BUT thought I would share a little, and show you the "fighter" Hudson proves to be when we make him angry....also known as putting him in the stander for the first time in over 6 months!
You may notice many single spasms, and at the very end of the video I did get a short tremor...see if you can tell what I am talking about.
I am getting concerned. This is why I really hate mentioning any seizure improvement...because it never fails to bite me in the...
Last night Hudson vomited at about midnight, and I was worried it may have been illness vs. Mito related. Then it happened again,tonight, not to long ago, but not all day, so I am pretty sure it is seizure related. He was also quietly awake through the night, and awake all day...all unusual behavior. The one thing I feel very lucky about is the fact Hudson sleeps...I have been told kids with Mito are either extremely sleepy or can sleep very little. For Hudson, lack of sleeping hasn't been an issue.
He had 4 tonics today-along with single spasms and after he threw up tonight he had a cluster.
My concern is a new thing...I noticed this a lot today-
It looks like Hudsons head is sort of shaking, but it is very subtle and his eyes sorta wince or squint, he also looks as if he is smiling or maybe it is just the whole face-wincing thing. I can sort of feel this little tremor within his body when I am holding him...what I am describing is pretty subtle movements, but it is concerning me.
Wondering...
*drug related?
*seizure? (Lord help us, NO!)
I really don't feel like I can describe it acurately...just seems odd to me and something is not right. Anyone out there have a clue what it may be?
My description isn't great, I know, but I may call or email Mito nurse.
I am happy to say our bout with the stomach flu was less than a 24 hour deal.
My poor baby girl had it bad...really bad from about 12p.m. til 7p.m., and then she slept the rest of the night until morning and woke up, back to my happy Hailey.
It amazes me, as I realize how easily a healthy child rebounds. Hailey was weak...couldn't even keep water down through the day, had "D" on top of the pukes (at the same time, blahhh!), and yet a good night sleep after getting it out of her system and she was completely recovered. I can't imagine what toll that would take on Hudson...pretty sure it would land us in the E.R.
Thankfully, my other 2 H's and myself have not gotten it, and for that...I am grateful!
After 24 hours passed...I let them have some snuggle time together while watching t.v....it was killing Hailey to not be around her baby!
The last 2 days have been better seizure wise...I really question even mentioning it, just because *better* never lasts...too long. I am sure I sound like a pessimist...that's just what dealing with this stubborn seizure monster has done to me...not my general outlook though, just my seizure p.o.v.
Today he had 2 tonics...that is drastically less...and no startles or huge clusters. Tomorrow is the last of our increase in Vimpat before we see Dr. S. Would be nice to see the trend continue....we'll see.
My husband has been in a conference all weekend in CA and being it runs until 10:30 at night, I haven't got to talk to him much at all. When we briefly spoke last he had mentioned he would be home next weekend but didn't get any details. I found out tonight that he will be coming home, on the company's dime (huge smile) on Friday and will be staying until Wednesday (really huge smile) because he has hired and needs to train an employee out here! I am thinking this needs to be a surprise for the kids. They know he is coming next weekend, but he will be flying in Friday afternoon, not night! Anyways, really excited.
Our weekend was busy. I had my *girls* night out Fri and played Bunko and actually doubled my $10 as I was the "biggest looser" (anyone who plays knows the lingo!) Always a fun time with about 12 of us...and let me tall ya, these women like to party it up...big time! I couldn't stay out to late, because my mom and Fred had Hunter and Hudson (Hailey was at a sleep-over) and when I used to go Paul was home and the kids could go to bed. Got to my mom's at about 10:30, and both boys were out cold!
Saturday we had a nice day. This was the part of my day that I had my *divine* meeting, which I will get into, but briefly, we went to the YMCA as I had enrolled the kids in swimming lessons and Hailey got ballet, and the classes started this weekend. I thought it would be good to try and fill our Saturday's with something positive and "free" After most of our afternoon there, Hunter had a friend over from school.
Today we went to church, met some other friends at the skate park (the sun had returned) and had family dinner at my mom's. So, all in all, a good weekend.
My *divine appointment*....
I love it when God just shows up...
I love it more, when in that moment, I recognize I am having one of those moments....
super cool.
You see, I have been thinking...
about me lately....
and how I really don't take care of me...
at all....
in so many bad ways....for instance....
since giving birth to Hudson...
I have not been back to the OBGYN...
to, ya know ladies....
get my "annual" (which I did annually, prior to Hudson)
NOT good...I know...but the last thing I want to do is make another doctors apt, and well you get the picture.
I also wonder.....
what lack of sleep, stress, anxiety has done to me on the inside and the outside....
because I feel like the last 2.5 years has aged me....
and my appearance.
After having Hailey, I got really into working out doing step-aerobics and kick boxing.
I actually loved it...was sort of an addiction, and I was pretty dedicated to my work outs...
about 6 days a week.
My workouts today consist of carrying and lifting my so sick, 2 1/2 year old baby boy.... running to his side at the scream of a seizure... hauling a medical stroller in and out of the car....
not the kind of workout I thought I would be doing after my third baby arrived....
but it is.
So, I have tried here and there...
to get a walk in, or take a class, or park Hudson's stroller next to me at the crowded gym (when he was in the "bucket" infant seat).
We belong to the Y, and this brand new, beautiful facility opened here in Gig Harbor, right before I gave birth to Hudson. When he was about 2 months old I headed back there, excited to get the "baby weight" off and get back in to a routine of classes and working out. Hudson went in to the nursery a few times, because we had not seen seizures, or the face of this disease, and we thought he was healthy.
It was a short, unsuccessful run at the gym, when life would forever change with seizures becoming our new marathon. I haven't been up to the Y much in the last 2.5 years. I envy the moms who mindlessly can throw their kids in child-care, and give themselves an hour...I used to be one of those moms....I miss being that mom....I don't like that I have lost that freedom...it completely sucks actually!
So....my mindset was to get the *kids* up there, get them moving and eating up the day, so what used to be hanging out as a family with Daddy on Saturdays was being replaced by positive activity for the kids. I thought I could walk the track with the stroller, which is better that nothing, right? I will admit, though, I am the kind of person who like to sweat when I work out, I like to work hard if I am going to do it, and walking the track doesn't really excite me, but that is about all I can do when I have a toddler aged kid who is constantly seizing.
So back to my divine moment...
We do the swim lessons, rush to change, get Hailey up to ballet, which happens to be a 45 min. class.
Parents are camped out in front of the room where the class is being held. Me and my bulky stroller and Hunter are too...in the corner of my eye, across from the room and the track, I see an elliptical machine all alone, in a corner that is facing the room Hailey is in, and I take the boys over there and face Hudson towards me, and hop on the machine.
It felt so good.
and no one could see Hudson, or his seizures or anything...
it was perfect.
As I worked out, Hunter did a few laps around the track. As he came upon me, one of the Y workers came up to him and asked if he wanted to join a family fun class where there was a bunch of activities. He asked me, I said sure and off he went. The class was right next to Hailey's so it worked well.
I got 30 minutes done on the elliptical and then it was time to get Hailey.
Changed her into gym clothes and she joined Hunter.
I sat down and the Y worker who had asked Hunter to join the class told me how sweet Hunter was and asked the ages and names of my other 2. When she looked at Hudson and asked how old he was, I felt the tug to say he is a sick baby and suffers from a seizure disorder. I explained how it had been a long time since we had spent a day at the Y, how much I missed it and how good it felt to get a 30 min. work out in. I also told her how I used to love taking classes, how life has changed, how I feel uncomfortable having Hudson parked next to me in the cardio areas, because I am certain the last thing other parents want while they are working out is to hear Hudson cry out, seize, etc. and really....it is more stressful for me than anything.
As we talked, she had compassion, and told me my family belonged there just as much as anyone else....she stressed it is a "famliy" YMCA and that we should feel embraced, etc, etc.
She then asked me what I had going on on Tuesdays in the eraly evening, she teaches a step class at 4:30. She told me to bring Hudson and the other 2 and she would set me up in the classroom, and she would love to have us there. I told her that he might cry out if he has a seizure...she didn't care...she told me to come.
She also told me to come on Friday night when she holds a Zumba class (not too sure about this one, I will feel silly) and that Hunter and Hailey could do this as well and Hudson's stroller too! It just so happens that we are up there from 4:30-5:00 for Hudson's pool therapy and the class is at 5:30!
She was sincere, she was totally inviting and encouraging and I knew this was more than just "luck"
but the kicker was when toward the end of our conversation, I for some reason,(reluctant because I didn't want to have to explain mito) mentioned Hudson's seizures actually being a symptom of a disease called Mitochondrial disease, and at that moment she instantly chimed in and said....
"I know mitochondrial disease, a family member of mine has it."
I knew our meeting and the fact that all of this "me" thinking had been brewing in my mind the last few weeks, I just knew God was intervening in that moment.
I plan to now get some "me" time. No, it's not the way I used to, and not the way the other moms get to....
but I have no excuse to not try and do something that would be really good for me.
I plan to go to the Tuesday class, hopefully the Friday class, and then find my machine in the corner on Saturday. It may not be 6 days a week...but it's a start and it's better than nothing!
And finally...thank you God....for showing up when I least expect it, and giving me the vision to see you working in my life!
