See Christian and Lola's ISR video!

Sunday, August 30, 2009

This Week!

This week will be the end of our hospitalization journey. I'm so proud that we are going home. I'm proud that we've made it to the other side and Christian is going home with his eyes open, breathing, and his little heart beating which was not how he left home. To put it quite bluntly, he left home clinically dead and is coming back alive. Just think about that for a second. It's really miraculous, especially since many children found in the same situation as Christian reach a far more devastating fate.

This week will mean many things for our family. Our lives will be different. We are different. We are the same people underneath and we have the same love, if not more love, than we had before for one another. But we are changed forever. Whereas we used to fret over really insignificant things, our eyes are open now to what's really important. And what's really important does not include the size of our house, the year of our car, boats, purses, etc. In fact, when I visited home shortly after the accident I walked into my closet, looked at all the clothes and accessories hanging lifelessly and asked out loud, "Why do I have all of this sh*t?" None of it mattered. And you really get perspective on that after you've lived in sweatpants and tshirts everyday of the week with no makeup.

This week we get to be a family again. Our family will be different, but the same. We get to laugh, joke, yell, tease, hug, snuggle, and bicker on a more permanent basis. We get to eat around the dinner table, have movie nights, and Sunday Specials (chocolate chip pancakes - Gabe's favorite).

This week is full of big changes and big moves. We have to make sure all of the medical equipment gets where it needs to go, that we have "to go" medical equipment to make the trip from Phoenix to Tucson and that we have some kind of idea about how to get PT, OT, and speech set up as soon as possible.

This week I have to speak with Early Intervention again. Get this - I talked to the lady on Friday about signing papers and I asked her again about how much PT we're going to get from the state. She was in a hurry so she said abruptly, "EI is only going to give you 4 times a month..." She has said this a couple times so I'm calling on all my EI specialists who have given me such good advice. How do I get more? Because it sounds like the EI lady has been trained to read a script and say "...four times a month, four times a month."

This week might actually happen and it all starts about 8 hours from now when I wake up. Of course, this is all tentative. It won't be final until MIA doctor who comes back tomorrow, supposedly, makes the official confirmation.

We have been waiting for this week. Wish us luck and prayers because there will be A LOT of changes.

10 comments:

colekd said...

Best of luck to you guys in your move & I hope it's a smooth transition for your family. I love your attitude...you rock Shauna!!!
Karen

Baby Billys Mom said...

God bless your family Shauna! I have prayed endlessly for baby Christian!! Please know how much God loves you and your family and if you ask Him He will give you strength!

Love in Christ,

Tara McNaught

Amy said...

I wish you the best of luck with this transition. If you can for his Gtube get a Zevex infinity pump, its the smallest lightest pump! I love our infinity and don't know what I will ever do if we have to change. Also here is some good info that was sent to me regarding funding for therapy. I really hope this helps. All I was able to get from EI was PT once a week, Ot and Feeding/St once a week. PT even discharged him looooong before he was ready and he no longer qulifies for OT through the school (he is over 3yrs). Again good luck with the transition home.

This may come as some welcome news to those of you struggling to pay for
therapies, etc. not covered by insurance.

Grants Available for Families Struggling with Child Health-

Related Expenses

Deadline: Open

The UnitedHealthcare Children's Foundation (www.uhccf.org/>
www.uhccf.org/ ) has announced that new grants are available to help
children who need critical health care treatment, services, or equipment
not covered or not fully covered by their parents' health benefit plans.

UHCCF provides grants to families to help pay for child health care
services such as speech therapy, physical therapy, occupational therapy
sessions, prescriptions, and medical equipment such as wheelchairs,
orthotics, and eyeglasses.

Parents and legal guardians may apply for grants of up to $5,000 each for
child medical services and equipment by completing an online application at
the UHCCF Web site.

To be eligible for a grant, children must be 16 years of age or younger.
Families must meet economic guidelines, reside in the United States, and be
covered by a commercial health benefit plan.

RFP Link:

www.fconline.foundationcenter.org/pnd/15013057/uhccf>
www.fconline.foundationcenter.org/pnd/15013057/uhccf

For additional RFPs in Children and Youth, visit:

www.foundationcenter.org/pnd/rfp/cat_children.jhtml>
www.foundationcenter.org/pnd/rfp/cat_children.jhtml

Cathy Dirksen

Director of Communications and Development

SEEC

8905 Fairview Road, Suite 200

Silver Spring, MD 20910

301-576-9043

Helping People with Developmental Disabilities Acheive The American
Dream.

ferfischer said...

Here's hoping your transition home will go great! Really, you will arrive at your "new normal" quicker than you thought! I know it's emotional, coming home and leaving all your therapists and the hospital "safe" place in case of emergency, but it will go great. I remember too what Cici was like when she left home (also not breathing and without a pulse) and what she was like when she came home - ALIVE!!!! I'll be thinking of you lots this week, and let me know if you need anything at all. Oh, and setting up EI was a challenge! See if they can use your therapists already to bypass the "qualification" stuff, and possibly even have your IFSP (goal/planning meeting with all the therapists and the coordinator) at Hacienda while you're there, so everyone can talk to each other. Or, ask for the therapists notes and stuff so you can bring it to your "eval" meeting yourself. But, seriously, ask the social worker about any steps you can skip! Because, duh, he qualifies! Once you're set up, it will go great - and mommy the therapist will take over! It's such a change from the hospital setting, but being at home is priceless.

Alicia said...

First, I wish I had some helpful info for you to use so you can get more therapy. Marissa has only ever needed PT, OT and ST once a week so we have never had to fight for more. I wish I could be of more help but I'll be praying that Christian is able to get as much as he needs.

Second, I am so praying for news of you guys being home this week. What a blessing that would be!! You so deserve to be a whole family under one roof again!

Way to go Christian for holding your head up!! You are working so hard and it is really paying off. I am so proud of you!!

Finally, when you mentioned that Christian "left home clinically dead and is coming back alive" I stopped right there and thought about that before I could read any further. He truly IS a miracle and SUCH a fighter!!

God bless you all!

lisas said...

reading all of the posts brought tears to my eyes.
you girls above are awesome!
shauna, i'm so very proud of you and christian. wishing you and your family a smooth move.
yeah!!!!!!
love, lisa

Colton's Journey said...

We like our infinitely pump as well. See the company/ equipment agency can get a backpack...the small one works well as a diaper bag. I was told from our early intervention cm that freq. can be determined by insurance and evaluator. So get after your case manager!!!! CONGRATS

dawnfirstclass said...

You are a great mommy, Shauna. We think about Christian every single day. Keep up the good work!

Vixx said...

Im another who can vouch for the Infinity pump, tho here in the UK things are different and all care/eqip etc is free to those in need, tho on a lend basis.. we have gone through 9 Kangaroo pumps over 17yrs but the Infinity is by far the best.

I can honestly say Shauna that Christians story has made me cry with sadness and happiness over these last couple of months, you and your family have gone through so much and i applaud you for your strength.

Keep fighting little man, i can't wait to read how home life brings out the rest of your personality and the new Christian ;]

Shauna, Manny, Gabe and Christian, EXCELLENT work xx

kiera said...

Your blog today touched me! I am so glad I got to meet you and Christian! Actually being at the facility has made an impact on me(and I wasnt even there very long). I do think about your room mate and I just cant stop thinking about him. I was telling my husband I want to go back and see the other kids and spend time with them. I am glad you and Christian get to finally go home!! It will be a new beginning and I am sure you are ready to move forward. Good luck with the move and have a safe journey HOME!!
Love, Kiera

Post a Comment

Popular Posts