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we are still here, so where do I start. . .

Tuesday, November 19, 2013


So how do you sum up 9 months?!

First off, can I vent about BLOGGER here! I have had trouble for months, can't upload pics or won't even load my posts at all! I'm so frustrated, not to mention there is next to no support. Took me 2 hours to get just one photo uploaded yesterday. So I'm praying I'll actually get this one done, saved and published without any problems. So excuse this update as I feel it will be all over the place!

I actually had a long post already written up in March because... 



 OUR BEAUTIFUL BOY TURNED 10!




The guilt of not posting it was too much. I never finished it due to all the Blogger issues, and in part because I wanted it to be perfect, after all, this is a HUGE Birthday! Honestly, just making it to age 5 with Mitochondrial Disease is a celebration, at age 10, we are so blessed and thankful.



 It's been a rough road over the years for our guy but all things considered, he is doing better than we expected he would when we first got his diagnoses 5 years ago.

We really had no clue what age 10 would look like. I guess it looks a lot like this! I love the 3am sillies! (no, I really do!)



So how is Jack?

He is doing quite well right now, which really means he isn't inpatient and is stable:) AND to add nothing medical at all---you can see we've gone shorter with his hair!  I guess it was time, I've been fighting it forever! Dad wants it shorter, but this is as short as it gets for now! (mom still rules when it comes to hair in this house :)


But we have been through a lot in the pass several months. Losing weight, poorer motility, nausea and physical/occupational therapy. We had to make changes to his feedings and I'm happy to say that our boy is NO longer FTT, he went from 3% to 19th%! He has gained nearly 10lbs! This is huge for Jack, as he's always struggled to gain and keep weight on. He is getting a lot more Elecare formula through his tube at night and its working, thanks to an added Motility drug and a couple others he needed. He has also grown a lot in height too! He is nearly 4'8" now. Just amazing the progress he has had with this new feeding plan. His GI Dr. is more than thrilled. Lets pray we can keep it going and there's no illness to set him back.

But with more weight, his hip is bothering him more. They say it slips out of place as he walks, his hip x-rays are normal. This is the reason for the foot that turns in and the awkward stiff gait he has had forever. Jack has now been referred to see an orthopedist. I was told this was difficult to treat a couple years ago, all was offered was Physical Therapy to strengthen his core muscles. We will see what this specialist has to say.



Back to Jack's Birthday!  

Looks like these boys may have a little more "boy" to their bodies (ha, his little legs)
 but he's not too far behind! They all had a great time.



I'm a 5th grader!

Jack, you're always so stylish :)

Can you believe it?! I still can't. Not sure if he will make it to school more this year, we are hopeful but also not stressing over it either. He actually missed 140 days of 4th grade :(Sadly, his attendance just gets worse and worse each year. But I'll remain optimistic.

Jack will continue to get Home Hospital Tutoring twice a week from Debra, an amazing woman he has had the last couple years. We will continue to modify his needs as they arise. The school decided he should be waived from the state testing as he ended up absent 1 1/2 months last testing, it just exhausted him so. I feel much better about that. It was also difficult to test him because he needs someone the entire time to scribe for him.



Senna and Jack on the first day of school.



 Marlee

AND Jack isn't the only one that has changed!

 Look at our little puppy, Marlee is full grown! She is 10 months old now. Her butterfly fringes on her ears have come in and she is on her way of living up to her breeds name! She has completed our family and filled that hole in all our hearts since Mya was killed.



Graduation!

AND our beautiful daughter, Senna graduated from Highschool in June.

Wow, now I'm really feeling guilty for not blogging about this one! that's sad. I had a lot of tears that day, can't believe she turned 19 in Oct and has started college this fall. We are so proud of her, she's such a good girl.


Proud Daddy!



Love this one,  just before heading to the graduation ceremony. 


These two are so much alike, right down to their early arrival, birth weight, sensory issues, feeding problems and developmental delays. They even looked a lot alike as they went through the baby and toddler years. Our first born and last, they could of been twins!





Senior Prom!

Oh and I can't forget to add pics of Senna's Senior Prom, so beautiful.



The Boys.

And yes, these are our boys, one taller than me now!

Easton is a Junior and Logan is in 8th grade this year. And Logan's shaggy hair got cut off too! It makes him look even older (Ha, and you should hear his voice, its that age!)  I think its time to update those pics on the right of this blog, don't you think?!


Easton turns 16! 

He also got his braces off too! after 4 years :) Wow, our boys are changing so much. I guess its time I sign him up for Drivers Ed, can you tell I'm dragging my feet on this one! ugh. Just really dislike sitting on that side of the car... I mean who lets children drive?! Not to mention what car insurance will cost for a 16 year old boy :/  What are the chances I can stretch it out until Logan turns 15, and then they can take the class together and save me all that driving time!




Summer Vacation

We headed to Palm Springs in July for 2 weeks, we drove. Jeff flew back a week early to get back to work. My sister and her daughter flew down for 5 days too! So good to spend that time with my sister.


I drove the kids home myself, road trip! It wasn't so bad, actually I learned a few things about my kiddos during that 22 hour trip! we had some interesting conversations on the way home :) Honestly don't know how many more vacations we'll be taking as a family now that Senna is going to college, and working. So I've got to enjoy every minute. It seems very strange, to think we won't be a family of 6 when we vacation, makes me sad.  No Like :( this getting older stuff doesn't get any easier.



We stayed at our families home in La Quinta, CA. (very close to Palm Springs) It was really nice to arrive to a house rather than a Hotel. It was HOT, but we knew this. 110 degrees during the day and 100 at night, but you actually do get use to it. We saved a lot of $ by driving and staying here. A Hawaii vacation this year was just too expensive, airfare has gone up so much.




And because we drove, Marlee was able to come with! She was amazing in the car, I worried about her whining the whole way, but she did great. Marlee also got her first taste of swimming. She didn't love it, but she did love the house and the AC!



 AND Jack loved all the swimming, he always does!



Holding my sweet boys hand :)




But there are some things you need to know about desert living! There's these things called Scorpions! Ugh, we did have the pest guy come and spray, but not too comforting knowing these things are hanging around, along with the black widows. We should be so lucky in the Pacific NW.



Ahhhh, but we loved these little guys!



 
Off to Sandiego for the day to Sea Life Park.

Senna Feeding the Stingray.
Jack getting bitten by the stingray!
Yes, they had to call the medics and clean his wound, he was OK :)
well that doesn't happen everyday!


how about a beer :)



While we were there,  the fires broke out in the mountains, it made for some crazy skies! Ash fell everywhere in town. It was hard to capture it but the sun was a bright RED, never seen that before.





and now it's fall again...



 Time flies so fast, like the color of the leaves,
they quickly change and then gone again. 


I have no idea what the future holds for our guy, I do my best to stay positive and live in the moment but those statistics continue to haunt me. We've lost so many little ones since I last posted here, so difficult for me.





Each birthday is bitter sweet, enjoying each year but also wishing he would stay right where he is. An emotional roller coaster where I am still learning, this is just part of our journey--may it last forever sweet boy.




AND A BIG THANKS! to everyone that continues to check up on Jack, if you're still out there! I made a promise to myself that I would keep this blog going, even with all the craziness. 




10 comments:

Reagan Leigh said...

Great post! Love all the pics! So glad that Jack is stable right now! I love those stable stretches!!

child of God said...

So much happens in 9 months! Thanks for sharing all the news and pics. Your children are growing and thriving. :) I'm so happy to hear Jack is doing well, putting on weight and growing. Woot!! Thank You God!

Blessings hon,
<><

Erica B said...

Great to read your update - as always...love the pictures! Congratulations on the many milestones that were reached. Glad Jack is stable. :-)

Clara-Leigh said...

I just love you and adore Jack. Isn't every year so monumental?? It is amazing how these special kiddos have changed our perspective.....in amazing ways!!!

Anonymous said...

http://www.madinamerica.com/2013/11/dispute-diagnosis-traps-teenager-boston-childrens-hospital/

Just thought you should know about that, albeit off topic. I've kept an eye on several cases of that happening to kids who have been diagnosed with mitochondrial disease and whose parents take them to doctors to try to find how it may be harming/killing them.

They don't care what the doctors have to say, only that the parent saw x number of doctors in whatever number of months.

Amanda said...

Love to see your journey. Jack is such a sweet boy. I'm just a quiet non commenting viewer that checks in every now ant then and I'm glad to see you're back! Hope Blogger gets better. I blog over on wordpress (many blogs actually) because of the same issues you speak of. Your puppy is cute too! :D - Amanda

Wolfram S said...

Hallo,
Please contact me by e-mail, I notice from many of your postings that you pay incredibly high prices for your sons medcines.
I can probably find European Equivalents for some of them and send them to you (I do not ask anything for them) You would have to check with your own doctors first.
Wolfram.W "wolfram.wr@mail.de" PS. will you please remove this information from your site as soon as you have read it,

Don Clark said...

What an informative and beautiful blog. Great pictures of Jack & your family. I know I don't have to say this, but you should NEVER feel guilty for not posting as frequently as you would hope to. I cannot imagine what your daily routine must be like. In my search for Mitochondrial I came across the CaringBridge part & here to your site. Have been reading it and am glad that things are as well as they are. I wish you & your family the best
Sincerely,

Don Clark

ps: if you are on Facebook and update that regularly, would you mind adding me as a friend (or whatever) so that I can keep abreast of Jack's progress? thanks.

Carrie said...

Wow! What a year! Happy belated 10th birthday to the Amazing Jack! Congratulations to Senna and happy belated birthdays to Easton and Logan! Marlee is adorable and your family is beautiful as always! SO Super thrilled to know you are all doing well and get caught up with you. I can't believe I have been following your blog for so long...I sure missed your updates. I will continue to keep your family in my thoughts and prayers. I'm thanking God today for all of his abundant blessings! :)

Carrie in California

Anonymous said...

Happy Birthday Jack!!!

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