Thursday, April 28, 2011

sooooooo sleeeeppppyyyyyyyyyyy

Usually, Lillian asks to go up to bed. This night, I sat and watched her little head bob up and down and she dozed off in Ally's playpen. too cute. Don't worry, I took her straight to bed, but you know I had to get some pictures first.

Tuesday, April 26, 2011

Vestibular Eval

Today we made an early morning run to KY for Lillian's vestibular eval. I have to say, the doctor was fabulous. Very sweet and friendly. Aside from driving past the building three times, I finally made it there with a pounding headache...(bc I hate to be lost). It was an interesting evaluation. We have had concerns about Lillian's steadiness and sometimes seeming dizzy. It seemed related to ear infections,which makes perfect sense. I found out today, and I probably should have already realized it, knowing Lillian is delayed also means her vestibular function is also delayed. All of the things kids learn from birth builds their vestibular movements. Since Lillian did not start walking until the age of two, her vestibular abilities should be considered delayed about two years. It was a light bulb moment for me. Seriously. She said a lot of times, therapist will work with a child on a level where the child should be without considering she needs to go through all the steps she missed being developementally delayed. I'm probably not explaining this very well....since she is 4, therapy might be focused on what a four year old should be doing...not necessarily what a 2 year old does. Make sense? Ironically enough, many of the activities we discourage the kids from doing with Lillian too much, are the very things she told me to start doing with her twice a day if we can. How's that for MOTY? I couldn't get over it, as I thought about it. I mean, spinning or twirling. This activity builds her balance. Who knew? Walking or bouncing on soft surfaces. (She sent us home with a big old piece of foam). Did you realize these little activities that just seem to be fun, are actually exercises in building balance?I thought it was cool. Anyway, the best news, there is no vestibular "problem" per se. I couldn't give you the technical terms she used, but Lillian does not have anything that is out of whack... her issues are basically from delay. Not ear or eye related. This is good. We have to go back next month for some additional testing and a hearing eval. They are getting in new equipment specifically for pediatrics they are going to evaluate her with further. I highly recommend this facility if you live in the southern area and need help. Heuser Hearing Institute. Nice, clean facility right near 65.

In other news, have I ever mentioned how much I love watching her run. OH, what a blessing. In the car on the way down this morning, KLOVE was playing Mandesa's Only the World, and all of sudden I hear, "Wooo" and Lillian was bobbing her head and clapping her hands to the beat of the music. It was awesome. The drive down and back was pleasant, it rained only while we were in the clinic and not while I was on the road. I am so thankful. I dreaded going somewhere I've never been before because I hate getting lost. Once I drove around the block twice, I called and noone answered the phone, my stress level really went up. It all worked out though, I feel so peaceful right now.

Friday, April 15, 2011

ENT again

Another long day driving to see Lillian's ENT. We are pulling back on the prevacid and she wants her to see an allergist. So add another dr to the list. It's all good. Her appointment was at 1:15 and we saw the doctor around 2:10. She really wants to take out the adenoids but that will just cause more problems for speech. She also did not speak to the plastic surgeon like she said. She says she will touch base with him before our next appointment. I have to say the snotpalooza is better, but still a big problem. Poor kid can't even wear her hair down or she winds up with a snotty hair mustache. It rained off and on all the way down there and when we arrived to the office, it was pouring. Of course. LOL. I did get to hold a sweet little baby boy for this Mom in there so she could run out to her car and grab her diaper bag. He was so precious. Didn't even cry when she gave him to me. I'm TIIIIIIIREEEEEEEEEEEDDDDDDD. So glad I prepped my main dish and got it in the crockpot before we left. Oddly, I saw at least three dead deer on the highway. Kinda strange for this time of year isn't it? AND speaking of the highway..what on earth could possibly be covered up on a semi trailer requiring 3-4 police escorts putting tons of distance between the truck and their cars? Glad I wasn't behind that mess. I'm so tired, did I mention that? Rainy and cold outside and it cost me just under $70.00 to fill up my gas tank. OH.MY.WORD. We are in a heap of troubles if Matt gets laid off for very long. They are shutting down the factory for five days next week. He works for a Japanese company, I imagine you can figure out why. God is good, it will all work out.

Monday, April 11, 2011

Warrior Mama goes to bat

I've spent five days discussing this speech issue with Matt and praying in depth for a clear, concise answer. These are the days that my people pleasing personality get a real swift kick. I admit, I'm a people pleaser. I don't like to make waves. I don't want to be viewed as difficult. I decided I would go in and just discuss my concerns with the rehab manager and depending on her response, I would know what steps to take next. So today, on a nauseated stomach and a restless, sleepless night I prayed all the way to rehab that I could muster God's strength to clearly communicate my position without having a total meltdown...and friends, you know I'm prone to the meltdown. I nervously approached the desk and asked to speak with the rehab manager. We stepped in the room and I laid my case. Me: Mrs. Speech has informed me that Lillian's half hour session is being dropped in order to see children on a waiting list. She states that we will progress back to her 2 hour sessions in summer. I don't understand how adding more children will ensure Lillian's ability to get her time slots back. I feel there is a lack of commitment for Lillian. I didn't like it when her hour was dropped to half an hour, but I feel I've tried to be flexible and reasonable but this is just not something I feel or her pysician would feel is acceptable. Lillian, herself, waited on a list quite some time, nearly a year, before being able to be seen by this clinic. If Mrs. Speech feels like she is at an impass with Lillian, then I would just rather be told that and find someone who can work with her. I like Mrs. Speech, but I will go back to her old therapist and drive half an hour or whatever need be in order to get her what she needs. I feel I've been placed in a situation of a rock and a hard place. Moving her, would then cause her to go an entire month without therapy due to insurance authorization. I just want her getting the therapy she needs and speech therapy is her greatest need. Yes, she gets 30 minutes of speech at school, but that is not always one on one and they don't work on feeding at all. Ms Rehab Manager: Ok, I need to speak with Mrs. Speech and see why Lillian's time is being dropped. If she is progressing so well or there is attention span issues. Me: Not as it has been explained to me . ( i reiterate why time is being dropped.) Ms. R.M.: ok, i would not want Lillian to leave. Let me talk to Mrs. Speech. I leave and, Lillian's OT takes her and Isabelle go to get her belly xray and get her back to school. I return, again nervous, Mrs. Speech brings Lillian out and gives me a short report. Mrs. Speech: So I get the feeling you don't want to drop her time. Me: I talked to Ms. R. M. Mrs Speech: Yes, I know. Me: No, I don't want to drop her time. Mrs. Speech: Ok, then we will add her back. I'm not really sure where my communication skills lack. I told her Wednesday that I didn't want to do it. Should not have been a surprise, I will say, though, that they present it as if you have no choice but to do what they say. I keep getting that experience. May I once again state that I DO NOT have a medical degree. Anyone missing that BIG fact? I depend on the them. An uncomfortable morning, but with a positive result. AND guess what? I didn't even shed a single tear. WAHHOOOEEEE! How's that for answered prayer? Thank you God for Your strength.

Thursday, April 7, 2011


I am having a blah kind of day. Not really sure why. Just am. Yesterday, Lillian's speech path informed me that because they had a waiting list of six kids, they were going to cut Lillian's half hour session so they could get these other kids in and out and hopefully by summer get her in for her one hour twice a week sessions. Maybe, this would not bother me so if all of Lillian's biggest needs are related to SPEECH. She kept asking me if that was ok, and I said, no not really. I don't know if I should get her back into her previous speech therapist or what. I don't know if I should just tell them NO, and I had to wait on a list for her to get in there....I'm feeling very helpless, yet again. How can I feel that I am doing what's best for her when the professionals in place aren't meeting her needs. I get a complete feeling of loathing when I am mixing formula each and every day. I want my child to eat and be healthy. I desperately want to break that boundary of speaking. This was just not what came to mind when we decided to have just one more. You know how your kids are sick and they don't like to take their medicine. Usually that only lasts seven to ten days. How about everyday....twice a day having fluids forcefully shot up your nose?? How about every day...having to sit while a breathing treatment runs. How about every day being hooked up to a hose four hours a day restricting you activities and movement. How about every day a bloody nose. How about therapies every other day just striving to learn to do what comes normal and natural for most everyone else. Today, I'm tired. I'm mentally going through the checklist of all that needs to be accomplished and did I give this med and that and have everything done that needs to be. I think most times I feel so normal...just not today. Not today.

Saturday, April 2, 2011

Complete? Did I say complete?

You can imagine my horror when upon cleaning my very messy desk...I came across the last little stack of pictures from Lillian's first year. ARRRGGGHHHHH. I just CANNOT believe it. Fortunately, the way I laid out her birthday pages, I can still add in the pictures that I missed. Today, my niece came over and we scrapped the afternoon away. Kind of. Her baby boy was fussy today, which is unusual, so we had many interruptions. I was able to complete several pages and I think I have two to three more to go. Problem with working on a particular theme, I feel like I'm making the same page over and over again. So, my recent excitement at having completed her album was a short lived celebration...I just hope I can fit the rest of the pages in the same book. It is getting pretty fat. Oh well, gave me a good reason to get my desk better cleared and challenge my brain a little. Lillian is still draining like a faucet and now it is bloodier than ever. Is it possible that nasal washes are irritating her more than helping? I mentioned Amanda being her with her baby. She is nursing and now Lillian is "nursing" baby Ally. I just about cracked up when I figured out what she was doing. My sister always used to be so appalled when my other kids emulated nursing with their dolls when I was nursing Madeline. Never a dull moment in this house.