Hope

I woke up this morning with thoughts of Hope*. Hope is a little girl from my past. The only person in my entire life that had special needs. I take that back...I had a great uncle who was blind and lived well into his 90's, but we didn't visit much.

Hope entered my life when I was 16 and working at a local daycare. She was there for the summer and honestly, to me, she was the little girl in the wheelchair. I was in the infant room at this daycare so I didn't have much contact with her. She was actually with children her own age which I now know is something very rare for a child with special needs.

I lived in a small town. I saw Hope often. At the store, at the gas station she was hard to miss. She was the little girl in the purple wheelchair. I tried not to make eye contact out in public, but always paid attention to her at the daycare.

A few years later a good friend got me a job at a local nursery. It was a koosh job and it paid good. Two days a week taking care of sweet babies for a few hours. I've always been the one to love babies. I would search them out and annoy their mothers with cutesy baby voices and I would often times touch the babies. Huh, if I had only known how it made the mothers feel...

My friend had been working the nursery for awhile before I arrived. The first Sunday I worked, there she was. Hope. The familiar purple wheelchair with the smell of summer and hot, sweaty plastic engulfing it. The easy to cut and take care of, chili bowl hairstyle. She was probably 8 years old at the time. The way she scissor kicked her legs. The fact that cognitively she was around 6 months old. The fact that we had to change her diapers. The fact that she wasn't in a room with other 8 year olds, but with babies. The way that she would yell if she disliked something and scream with a big smile on her face when she was happy. I now understand a lot about her cerebral palsy. Not because I had asked her mom, but I now recognize the characteristics she had. In fact none of us had asked what happened to Hope. There were rumors of a delivery medication accident, but I don't know if it was true. I never asked and for that I feel like I robbed her mother of something. I'm not sure what but why should Hope's life have been so secretive. Sure she was difficult to understand , but I eventually could read what she needed. We talked to her mom more on a casual basis when she would drop her off and pick her up. Nothing serious. Without knowing all the details I really connected with Hope. Overall, I came to love Hope over the many years that I worked in the nursery.

Which brings me to the instant, the exact instant, that the NICU doctor told me that Caleigh had PVL and I asked "What does that mean" and he muttered the words Cerebral Palsy; my brain went straight to Hope. She was my poster child for CP. She was the only person I knew that had it. I was so naive even then. I pictured my little 4 month old Caleigh scissor kicking her legs, sprawled out on the floor mouthing a toy made for a baby. I don't know if this made our news more tolerable or worse to swallow.

I am not telling everyone this story so that you feel sorry for Hope. She is a bright and beautiful little girl who is really just amazing. In fact, so amazing, that she will forever have a spot in my heart. I guess I just felt the need to put my feelings down. I have a lot of regret about the things that I've said and thought towards those with disabilities in my past and Hope was no exception. By no means was I a horrible person, but either way I feel bad. It's true that you don't know how a person feels until you've walked a mile in their shoes. I've been thinking about Hope ever since that fateful day in November of 2007.

It's been many years since I've seen Hope and her mom. She's bound to be a teenager now. Not the teenager her mom imagined her to be, and I wonder how she feels about that. Actually, every single milestone or decision we make with Caleigh; I always think of Hope and her mom. Maybe at some point we set aside our goals and dreams for our children and make new ones because that is life and that is what has to be done. I haven't given up on my dreams for Caleigh yet. I still have visions of the 'normal.' I wonder when that changed for Hope's mom. When did you decide to make new goals and dreams for your child? Or do you still have visions of the 'normal?'

*names have been changed to protect privacy

All Done, The End, Finished, Complete

Caleigh is officially off of all seizure medicine. No more Keppra. She took her last dose on Sunday night. We haven't seen anything dramatic in the last day. Meaning she hasn't had any seizure activity and she hasn't jumped up and said momma yet, but we will give her time on that last one!

These past 6 weeks have been incredible as far as development go. Just this past week Caleigh started repeating the letter G three times in a row. This is a great improvement in her speech. She has never repeated the same sound before. It's always different sounds all run together. So we are really excited when we hear her.

She has also started teething again. Eye teeth and whatever else is left over in that adorable mouth of hers. So instead of wiggling around the floor she is pretty much positioned on her tummy with her fists in her mouth. This is her interest right now. We are still trying to get her to move and she will occasionally, but until those teeth come in Caleigh will be hanging out in a puddle of spit.

Caleigh isn't really wanting to sit anymore either so I am hoping this improves with time. She was doing so well before her hospitalization. Her sitting really hasn't been the same since then. So we will continue to work on it.

This summer we decided to buy a little above ground pool for Caleigh. She has never been swimming before and has never had water above her waist level in the tub. I called around and all swimming lessons for special needs children are for 2 years and up. Since Caleigh will be 2 in August we decided that this summer would be about introducing her to the water.

We bought a cheap pool, we bought a saltwater pump, we got really excited....Caleigh....not so much. She hates it, she's scared of it and she softly cries while clinging to me the entire time. For someone who loves her bath time, and all running water, this was unexpected.

So after some searching and advice from some other moms, I ordered a neck float for Caleigh. This will leave her arms and legs free to kick and swim without letting her head go under. I had a lot of hope for this float and it does it's job wonderfully. The only thing is that Caleigh still doesn't like the water! Float or no float it's all the same. So I try to get her in the float and in the pool for at least 15-30 minutes a day. Maybe she will get used to it and not be scared. Maybe. I really hope so. It would be wonderful for her in the long run.

Here's the link to the float we got Caleigh: Waterway Babies It's wonderful for ALL kiddos....check it out!

Bugs!

Yesterday afternoon we were therapy and appointment free so we decided to take Caleigh to the Omni Imax Theater to see Bugs! It was a delightful film about bugs starring real bugs. Yep, that's what it said. We chose the Omni theater because of it's huge screen size, and loud sound system. Unlike a lot of children with special needs, Caleigh doesn't have the sound sensory issues. Actually with her, the louder the better. So technically this could be consider hypo-sensitive.

Anyone who has been to the Omni can attest to the first 5 minutes and the crazy helicopter ride over Fort Worth. At this point Caleigh decided she didn't want to watch anymore. I guess it was too much, a visual overload. So she pretty much stayed head down on my shoulder listening to the whole thing. Eric and I stared on, watching prang mantises eat the heads off flies and caterpillars turn into butterflies. The content was a little mature for our dear Caleigh, but as far as sounds go she was happy. She was flashing smiles between digging her head further into my shoulder. There were loud parts where I had to cover her ears, i.e. bats, but the majority of the time was tolerable. Caleigh had a few coughing reflux issues throughout the 40 minute film. I felt like we were interrupting every one's viewing pleasure. During the beginning announcements there was mention of a quiet room......we didn't search it out. Oh well, no one said anything....we were the family with the little girl, tube attached...who would say something? I did find myself trying to come up with a smarty pants fancy come back should anyone dare comment about our disruptions.

I think that I am such a germaphobe, that if I was in their place, not knowing Caleigh's situation, I would think she has a cold or something. So I don't want to be THAT mom that takes their kid everywhere even though they are sick and contagious, even though that is totally not the case. I really shouldn't care what others think. Should I? I've had the "oh, she has a cold, that stuff has really been going around, huh?" before and it made my head spin. Instead of going into medical mode, I simply said "nope, it's just allergies." The condescending mom gave me the look. I've felt stupid about my reaction ever since I said it....so next time I will be ready.

So besides Mommy's insecurities, I think Caleigh's first movie experience went very well. It really was fun to get out and do something as a family that didn't involve therapy or doctors. Plus, it wasn't such a bad place to be when the temperature outside was 104 degrees!

Blood, Shoes and Diapers

A lot of regular and basic stuff has been going on since I last posted. Caleigh continues to wiggle around and she is getting used to it. Not crying as much and more pleased when she actually gets to her destination. I'll have to get more video of it soon.

We went and did labs last Thursday. You know the old joke "How many people does it take to screw in a light bulb?" Well it seems it takes an army to draw blood from Caleigh. If they aren't intelligent lab people....it's takes a the whole country and their army! Needless to say they finally got the blood, but when we got the results the numbers were all crazy because it hemolyzed in the process of them drawing it. I got a frantic call at 9 o'clock at night from the GI on call making sure Caleigh was still alive. We will not be going back to that lab.

Friday we took Caleigh to the GI office. Everything including the dumping syndrome is looking good. All except the blood in her stool. We did an in office stool test...20 seconds later.....jackpot, blood in her stool. I swear it's really like going to Vegas everytime we do the test. Anyways, there could be a couple of reasons this is still happening. One being a food allergy that irritated her intestinal tract so bad that it still hasn't recovered. The other explanation is that the bacterial overgrowth still isn't under control. Caleigh is on a very hypoallergenic formula and hasn't had anything by mouth since leaving the hospital. We are still waiting on the allergy tests to come back as well. So we opted for the second theory and started a 2 week dose of Flagyl. Blood counts are good so no problems from losing the blood. We have a GI appt. scheduled for 2 weeks to re-check the stool.

Last week our PT suggested we get some hard soled shoes for Caleigh and preferably with an arch. This will hopefully help her toes relax and lay down with the feedback given by the sole of the shoe. So we loaded Caleigh up in the VAN (a whole other blog post to come) and went to the mall. We quickly learned that toddler size 3 shoes rarely have an arch. So we went through the whole mall sticking our fingers in itty bitty shoes looking for that illusive arch. Just when we had given up we came across these beauties, quickly snatched them and headed home. Caleigh has taken to wearing shoes wonderfully. No complaining at all. The weight of them seems to make her notice her feet and legs more. They don't stick straight out in a seated position while wearing them. She doesn't sport the new shoes all day but her big toe seems relaxed after wearing them a few hours. I think these are a good start. Caleigh will probably need AFO's in the future, but for right now this is progress.

K-Swiss with a little bling

Right before Caleigh went into the hospital we received a donation of over 1000 diapers from the DFW Charity Racing League. You may remember they have raised diapers for Caleigh before. Lord knows we need them! They are an amazing group of people who selflessly think of others and for that we are forever grateful. We really are humbled by such generosity. Thanks Guys!

I thought this picture was funny. She's trying to chew on the bag. Caleigh seems to be teething some more. There is ponds of spit everywhere. No joke we go through 3 cloth diapers a day just wiping it up. Her mouth is all over everything. It's crazy. I wish her teeth would just come in and be done. I promise not to complain when they all fall out and her permanent teeth start to emerge. Promise.