Catching up, really...

Oh gosh do we have a lot to "catch up" on. Lets start with the weekend. The party was a fantastic success! We had ALOT of fun and ALOT of people came. It was a great celebration of life and friendship. Livi did sleep for the first hour, but awoke in time for singing 'happy birthday', and getting to taste a small bit of icing, which she loved! We also raised a little over $200 for children's mercy hospital, which we are proud to present since they will be aiding us so much with our finances this year.

getting ready to blow out the candle

Squishing the cupcake

Chill'n with Aunt Mal's glasses after the party

On Monday at PT (physical therapy) we spoke with a social worker at mercy about our financial situation. She made some calls and our primary insurance will supply the pediasure (which has already been delivered) for just $75 at cost to us-- what we have budgeted for her food anyway. I think it would have been several hundred dollars a month for us to buy it on our own, so that was a real win. Also, our social worker spoke with the lady in the financial aid office again and she has already filled out the application for Olivia for disability. We will see what happens, but a lot of folks are doing their best to help out.

Tuesday morning at 3am Olivia's pulse ox alarmed (mostly if she knocks off her oxygen or is awake during the night). This time she was awake but it was alarming because her heart rate was so high. She also was running a 104 degree temp. We went straight to the ER and just like last time, it went down with one dose of Motrin and some sleep in two hours. Nothing on the chest x-ray, no known infection. Got our antibiotics and came home around 7am.

Tuesday afternoon we had a neuro appt and it went fine. No real issues, just doing a check up before the surgery. I think the neurologist was a little disappointed she was not progressing more quickly since the slowing down of the seizures. Though she is moving along, we all were a little sad she didn't just 'snap back' after the new medicine. Instead, it has been a long road.

Tuesday night we had a big storm. Tugger is afraid of storms and usually hides on the bed upstairs. He was up there for 2 hours and I went to check on him. On the first lap around the upstairs I could not find him. On the second lap, I found this...

Today at cardiology was fine. EKG, ECG as usual. Looks good. They schedule the surgeries every week at a conference. This week was already full so they should call next week or the following week with the date. Could be weeks, could be months. Whatever the schedule says.

We are all doing great, but it has been an extra busy couple of weeks and we are wiped! This weekend should be a great time for recovery...

Bored with Baby Einstein

This is Olivia watching her new Baby Einstein DVD I bought her. I know in the picture the TV is blacked out. I swear she is watching it.

This is Olivia less than 10min later...you guessed it! FALLING ASLEEP IN THE STANDER! AGAIN! I give up! Stander=Sleeping girl

We're Rich!!!!!

Not really. But thats what the lovely people in the MoHealth Net offices think. So, we do not qualify for secondary insurance for Olivia through them starting Monday. This would be reason to panic since our primary insurance does not come close to covering 100% of Olivia's expenses, but the Lord is good and provides in his ways and time. This time, it will be in the form of financial aid through Children's Mercy that apparently we are sure to qualify for and sure to pick up all of her expenses our primary doesn't if its a service we are getting through the hospital (clinic visits, surgeries, meds, etc...).

The only downside to this is our home medical equipment comes through another company. Our insurance usually pays some, but we will have to start picking up the rest. That could be at least another couple hundred dollars a month, but I don't know for sure. It will get hiked up since we are ordering yet another machine (Bi-pap) today. That brings the total DME (durable medical equipment) count to 5 in our house, plus all of their attachments and accessories. That also means that we will not be getting pediasure delivered to the house and paid for as expected. Oh well, that was just a perk.

Please be praying for us and our finances. We know there are people who will help, but we would like to ideally just raise the extra support so we don't need the extra help. The other thing is, the income restrictions on SSI are not as strict, so our financial advisor at Mercy directed us to apply for disability for Livi which would help in several ways. This, of course, is a lengthy process. We will try to be patient!

Lastly, we saw genetics clinic again today. They are sending off for variant DNA testing on some tests they have already sent off. I guess we will keep our fingers crossed.

I would just like to say...

That since my post on Wednesday I have read a book and half, watched almost NO TV, walked probably ten miles (intentionally) and my house has been the cleanest its been since we moved in. What the heck?!?! Partly due to my awesome husband who was on spring break last week (that'll help).

Livi is doing great. She wants to be on the floor trying to move almost all the time--something I almost always let her indulge in. The exceptions are when she needs to be napping and when we're in a restaurant (somehow not appropriate).

The weather is amazing. The fam is healthy, and we are all hands on deck to pull this birthday party off on Saturday. Can't wait to celebrate with friends and family. Wish Nana and Papa could make it, but we will send tons of pictures.

What a great start to the week!

Letting go of the dream

When I was pregnant, or really before that, I had these visions of pushing a stroller, as a size 4, with my hair done, in heals with a cooing baby. Gone are those days. Today my dream is getting a shower in before noon, wearing matching socks, with hair that has been cut in the last four months and a shirt that does not have medicine or vitamin stains on it. My house is not as I would decorate it with chic vintage finds and dust-free knick knacks. It it littered with medicine syringes, oxygen tanks and a pediatric stander that looks like a torture device. My kitchen is littered with dirty dishes almost constantly and my room looks like my closet threw up my clothes all over the floor--all the time.

Over the past year I have quietly but staunchly held the view that having a special needs child does not make my life different than other mothers.Yesterday and today through books and conversations that view has been shattered and I am in the midst of building a new and more accurate view and goal for my days. I read my first book about parenting a special needs child. I guess even the name "special needs" means different. I just didn't want to admit so. All these parents say that they can't keep their house clean either. The difference is that they admit it. Now I am too.

Here I am world. Kelly Key. I am a mother to a wonderful girl who is about to turn one year old. She does not operate physically above a 3mo olds standards and requires constant attention when awake. My husband is wonderful but absolutely busy. We have the best friends and family in the world. My house is not clean. My floors are muddy from the dog (who is the culprit for the hairy couches), there are medicine bottles and oxygen tanks everywhere. Most often I do not put makeup on in the morning because the physical therapists do not care. I make a good dinner maybe twice a week and my car is a disaster. But I am proud of my life and my family. And where I would not accept help, now I require it. I am a constant work in progress and mostly a complete failure, but I try the best I can at everything I do. And when it is not enough, I will now learn to call someone else and ask for help. And that is okay. It will have to be okay.

Lazy Sunday

Thank you all for your prayers. Baby Isaac has gone to be with the Lord yesterday afternoon. Please continue to pray for his family.




We planned to make it back to KC this morning, but part of my family went last night and saw three snow plows on the side of the road waiting to be pulled out. Snow plows. Seriously? A two hour trip took them five, but they made it. So, in no hurry, we will be coming back to KC tomorrow. As a result, this morning was very lazy, but fun. After some crawling work Olivia was so tired she fell asleep on the floor. Well, words don't do it justice. Here are some pictures. Happy lazy Sunday to everyone!

Please pray for Isaac's family

Though appparently yesterday was a great day for our little friend, today has proved to move in the wrong direction. His parents are going to have to make decisions about whether to put him back on the vent and whether to prolong his life for themselves or to let him go soon. It is a very, very sad situation. Please just pray for wisdom--that is their request.