Umbrella stroller!

Look who can sit up in an umbrella stroller! Going to the store is so much easier! I figure if she ever needs to I'll just kick it up on the back wheels but two trips and I haven't had to yet!

Our Baby Boy is 4 :-)

Max turned 4 today. He was having a hard time understanding that he's not 3 and so I finally told him "when you have a birthday you get a new number. And your new number is 4" He understood that :-)
It breaks my mommy heart a little to see him grow up. When Sophia was born, and I realized she wasn't going to hit typical milestones, I instantly wished I had savored it more with Max.
But we are lucky parents. We have all kinds of wonderful children and so many blessings. When I look at our lives from the Lord's perspective, there is nothing to be disappointed about ;-) It's a good life :-)

On their birthdays my kids get to pick out their own cake, frosting, and ice cream. So we got to have red velvet cake, funfetti frosting, and chocolate peanut butter ice cream haha ;-)

Feeding Tube Awareness

A friend on my support group mentioned it's Feeding Tube Awareness Week :-) I am so incredibly grateful to Sophia's surgeon for having the guts to cut open a baby. And to my husband for suggesting that we get the feeding tube placed before bringing her home. It was not an incredibly difficult decision, as our baby needs to eat to live.  But it was surreal... to give someone permission to do that. I know her feeding tube is one of the main reasons Sophia is doing so well! :-)

The nickname for children with feeding tubes is "tubies" ;-)

Our tubie in her new chair :-) She really loves the new vantage point!

If you are in Utah, please take a moment to write our reps

The medically complex children's waiver is apparently a pilot program which will be voted on this summer. We really really need it so if you live in Utah please email Evans Vickers and ask him to vote to keep it. If you live in southern Utah please email Brad Last AND Evans Vickers. And make it sound really important ;-) We would really appreciate it. Here is a copy of the email I sent yesterday.

evickers@le.utah.gov

blast@le.utah.gov

 

To whom it concerns,

Meet Sophia :-) She is our beautiful, happy, sweet, wonderful, about to be one year old girl :-) I am writing you about the Medically Complex Children's Waiver.



Almost a year ago I went into labor and we expected a healthy baby. With 5 kids at home already, she was decided to be the last one to complete our family. We thought that we would come home with our bundle of joy, and that our lives would be perfect as well as complete. While it is complete, it is not perfect. Having so many children already, we were nervous about the baby stage (particularly sleeping) but knew it wouldn't last forever and looked forward to her growing up so we could enjoy family life together.

When Sophia was born she needed a breathing treatment right away. Then she had trouble eating. When she was 3 days old they did an MRI and we found out that she has a rare genetic condition called pontocerebellar hypoplasia. Her brain stem didn't grow right. Because of that she would be a perpetual infant. So that baby stage we were worried about, indefinite.....as long as she is alive :-( We were also told she would not likely see her first birthday.

I don't pretend to know other people's troubles, but near as I can tell this is pretty much a worst case scenario. If there was anything that could be underdeveloped, the brain stem is the most difficult. It is the mainframe. It controls everything from voluntary to involuntary functions. And it can't be grown or transplanted. Her complexities are indescribable, but let me try.

Sophia is complicated to say the least. B/C the suck swallow breathe reflex didn't develop she is 100% gtube fed. All of her additional problems are neurological as well and there is no discernible rhyme or reason or pattern. Anyone who cares for her must be comfortable with the following:

-continuous Gtube feedings and administering medications.
-Suctioning her airway

-Deep nasal suctioning (up the nose down the throat)
-Administering breathing treatments
-Timing her seizures and knowing when to give meds
-Counting her respiratory rate
-Watching for labored breathing
-Listening for signs of pneumonia (she's a constant pneumonia risk because she has severe reflux and she aspirates daily)
-Recognizing and waking her from apnea
-Holding and comforting her when she's dystonic (uncontrollable movements which can get violent and stressful). Knowing when to give meds.
-Emergency procedure when her feeding tube falls/or gets pulled out
-Placing her oxygen and knowing the machine
-Placing her pulse oximeter and monitoring HR and oxygen
-Rousing her when her HR suddenly drops
-Watching for silent reflux/silent aspiration
And I'm sure I'm forgetting something...

Needless to say she is complex. Enter the Medically Complex Children's Waiver! When I heard about it she was just a few months old. We were waiting at Primary Children's for an appointment and an off duty nurse noticed all her tubes and wires and mentioned it to my husband. I was fried and overwhelmed and the paperwork seemed insurmountable. But with help I muddled through and thank goodness I did. Here is the relief it provides...

-The financial relief is huge. Our max out of pocket on our private insurance is $15,000.00 a year. She was in the NICU for two weeks so needless to say. we hit it. In April we applied for the MCCW open enrollment and we are so relieved not to have to pay that $15,000 this year.

-The Respite Hours. 13 hours a month an RN comes to give us relief. We primarily use the time for therapy, temple worship, date night, and outings with our other children since we are often home bound.

-The (possibility of) Night Nursing. I say possibility of because we haven't yet received it from MCCW, but we are working on that. So far her night nursing has been paid for by a charity, but that charity is not limitless and it appears to be drawing to a close.

Along with everything else the brain stem controls sleep cycles. Sophia sleeps 6 hours a night when she is healthy. Which is only about 50% of the time because her immune system is fragile and she catches everything. As an example she has been hospitalized twice for a rhinovirus (common cold) so mild, that the hospital staff said the rest of us could have it and not even know it. When she is sick the increased seizures, movement disorders, reflux and respiratory issues make it difficult to sleep at all.

So those are the most important ways that the MCCW keeps us functioning. Keeps my husband able to work. Enables us to mentally, physically, and financially handle the demands of our dear daughter.

The majority of babies like Sophia are stillborn. The next majority don't make it past a year. Sophia's birthday is coming up in a few weeks and recently she did not re-certify for hospice :-) It's an incredible feeling to have her beating the odds like this and we will take her :-) Alternately it's scary thinking of having a perpetually complex infant. I don't know what we would do without the Medically Complex Children's Waiver. I really don't.

I understand this summer there is some kind of vote coming up with the MCCW. I urge you to vote FOR it. Thank you for taking the time.

Congratulations Ashley :-)

Jason and I are taking turns taking the three kids to family events (and it's paying off, this is the longest Sophia's ever been healthy!). Yesterday was my turn! I got to go to Ashley's baptism :-) It was super sweet, she is such a sweet girl :-) Well worth the drive! I also took the opportunity to take the kids to breakfast at one of our old time favorite places to eat in La Verkin :-)

Max insisted he bring that superman pillow into the cafe, which I thought was cute until he layed on the floor 😬

Yummy breakfast.....  ;-)

Sarah's braids got messed up in the car. She said she was so mad she wanted to kick something really hard, so I suggested she kick a tree. 😏

 Sweet Ashley ❤ congratulations sweetie!

Patty Cake :-)

Good or Bad, Hard to Say

A mom posted this ted talk to my group yesterday. It's given by the mother of a daughter with a rare genetic abnormality. "Good or bad, hard to say" is some real wisdom. We would all be happier I think, if we followed suit with that farmer she talks about.
I relate to this speaker so well. Being pregnant, expecting a healthy child, and then getting something different. Getting somebody rare. I especially love that she says her daughter has "rare blueprints" and that she was destined to lead a rare life :-) :-) I feel that way about Sophia :-) :-) :-)
Additionally, it was comforting to me that this mom did everything right when she was pregnant, and still had a rare child. She says she ate organic food, exersized and took all the right vitamins. My pregnancy with Sophia was difficult. I didn't always have the energy to eat right and I was told I couldn't excersize. I also bought "mid range" prenatal vitamins.  Even though logically, I know I could have spent a small fortune on the best, and this still would have happened. Sometimes it's hard to get rid of that mommy guilt. So it helped me to hear her story :-)

https://www.ted.com/…/heather_lanier_good_and_bad_…/up-next…

P.S. there was one little thing that rubbed me the wrong way. I didn't care for the judgement passed on the transplant team for passing up her friend's kid. Doesn't seem to me that she has/gave the whole context there.