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.

Traveling sucks

So, this is why we haven't gone out of the city in six months. Last week the ER. This week our home health supplier decided they were going to CANCEL my request for oxygen delivery in Joplin. I guess that happened yesterday because I talked to a guy yesterday on the phone to make sure it was going to happen. It was. Then I was told this morning that it had been canceled and I have been on hold for thirty minutes. Now, I'm not generally an angry person, but someone is getting a piece of my mind. Especially since we probably won't be able to safely get back to KC tomorrow since its supposed to snow 6-8 inches this weekend after being 60 friggin degrees today. What the heck?!?!?

I also wanted to know if you guys would pray for a friend of mine. His child is very sick with a genetic condition where he is only the second baby to be diagnosed with it in the united states and not one child who has been diagnosed with it has lived to be 2yrs old. He is currently 8 or 9 months now, I think and is in the hospital with pneumonia--which is very severe for him. Last week they gathered the family thinking it would be his last night and miraculously and slowly he is getting better. Praise the Lord! They may get to take him home by the end of this weekend. As you can imagine, any time they have together is precious. The baby's name is Isaac. He is a very precious little boy.

Thanks, and when I finishing chewing someone out on the phone I will let you know the outcome. Enjoy today, for tomorrow it snows!

Problems on the road

We have been looking forward to this weekend for a long time--back in Fayetteville for the first time in almost a year to see our wonderful friends. Yet, a dark could descended when we had to take Olivia to the ER last night for her almost 104 degree fever. She was very uncomfortable and upset and so were we. I don't remember feeling that worried any time lately. We called our friends in KC to pray and all of a sudden, while still in the waiting room, a 30 min nap caused Livi's fever to come down to 99 degrees. They ran a bunch of tests for infection which came back (surprisingly--wait, not) negative. Who knows. No infection. But they did do a chest x-ray that showed a little bit of stuff in her lungs (which is I think is mostly what it looks like now) so they gave us some antibiotics and at 2:30 am we went back to where we are staying. Since then no fever, no high heart rate or low oxygen (which is measured by her pulse-ox she is on all night).

The mystery of my daughter continues. Yet, we do know this, that the Lord chose to heal my daughter. Sometimes prayers are answered the way you want. Sometimes not, and we get over that, but sometimes, just sometimes, the answer is "yes, I will".

Mr. Legs has been resurrected!

My guess is most people won't know what I'm talking about, and at the risk of putting a mental picture in everyone's head--I guess I 'll tell you.

At some point in my very early years (after having casts on both my legs at 6 mo) I got a pair of leg braces--yes, the Forest Gump kind--exactly like that if you must know. There were metal bars up the side, Velcro restraints to keep them on at the waist and on the legs and shoes attached at the bottom. Anyway, I was under the impression that he had died in my parent's attic a long with all our other old stuff long ago, but I was wrong. Yesterday at PT our therapist brought out a pediatric stander we had seen before, but was clearly too big for Livi. It was then discovered that the Velcro restraints were adjustable, so we adjusted them. Now, normally, our medical and therapeutic supplies are brand new, but this was right there, free, and they wanted to get rid of it, so I took it.

--Break in the story: since Livi is not spending enough time upright we are working her up from about 15min in the stander to some day the goal being 1 hr at a time in the stander.--

It actually does look like a torture device, but less so in the these pictures and at therapy when Livi FELL ASLEEP IN IT! Fell asleep standing up, now thats a new trick. It has be Mr. Legs reincarnated or something. The similarities are (from my memory as a very small kid) incredible! I tried to find a Mr. Legs comparable picture on the internet. To no avail. Mother, you are not allowed to try and dig up any pictures and get me to put them up, people can use their imaginations. Of all the things I hoped to pass down to my daughter, this is not one of them.

Also, Tugger spent the night in Livi's room last night after I couldn't get him to leave. I brough his bed in her room and he slept in there all night keeping an eye on her. She was VERY tired after being awake literally for 12 hours or more yesterday. Way above her norm. Her sats are kind of low, but Brian says he thinks its because she is tired. Jacked her oxygen up to a quarter of a liter from an eighth and keeping at eye on it.

Also, a picture from a week ago of therapy at home with Ms. Sherry. Livi is on a therapy ball.