Thursday, July 28, 2011

Taking a "staycation"

I cancelled Lillian's therapies this week. First time ever I've cancelled her therapy for any reason beyond sickness or hospitalization or dr appts. I have to tell you, it's been WONDERFUL. I felt immediate relief when I woke up Monday morning and had to be NOWHERE. LOL. I am eternally grateful that Lillian is still able to benefit from therapy and insurance continues to pay for it, but, friends, this Mom is tired. I do not work outside the home anymore, but quite honestly, caring for Lillian and the rest of my brood is more than a full time job. I know, I know, I know, I am surely not the only Mom out there who grows weary from time to time. I've always felt extreme guilt when I've contemplated cancelling her therapy. I decided if we truly had a vacation to go on, we would have to cancel therapy. Since I won't be taking any vacation any time in the near future, to my knowledge, I decided this would be the same thing. So, it's a staycation. Stay home, pretend for a week, that life around here is normal. It has truly been blissful. We are capping off the week by going on our first camping trip. This should be interesting. It is supposed to be dreadfully warm and I'm seeing scattered storms thrown in the mix. Of course, we realize, our plans may not work out for Lil. She doesn't tend to do well in the heat, so we shall see. That is the non-news in this house lately.

Thursday, July 14, 2011


Lillian's immunology tests came back just fine. PTL. At least we are ruling things out if nothing else. It sounds kind of sick to hope something shows up, but then that would be like answers or some solution to help her. Hopefully, she will grow some more. It is a struggle to keep her gaining weight, seriously, she was up to 29 lbs once and now she's hanging at 26-27. There for awhile, when she figured out how to run, she ran everywhere, she was probably burning some extra calories.
Today was the last day for ESY. I am so glad, between her school, therapy, and Bethany's summer school, it hasn't felt much like summer to me at all.

I have been down with an infection for several days and am so glad to see the pain finally subsiding enough to cross my arms again. You never realize how much you cross your arms until you can't do it anymore. ;0)

I need a vacation....

Tuesday, July 12, 2011

Happy 4th!!

She road her pony...played with random objects, flew off the back of the teeter totter swing...

Decided some fireworks aren't all that bad, but some really are....thoroughly enjoyed a great independence day!

Thursday, July 7, 2011

Moving Forward

After spending time with Lillian's speech therapist, and she in turn speaking with our ENT, it has been decided that we will go forward with the V and E in August. Our ENT plans to speak with Dr Plastics and pick his brain. She aslo feels if we get the V and E done, we can go to him again with the results. We never do things the easy way, do we? Course, in this walk, I'm not sure there is an "easy way". I think I've found some peace, either way. It is par for the course. It just takes me a day or two to absorb the initial shock of things. I always have hope, no matter how disappointed I am. God works it all out in his time. My lowest moments are my strongest times in Him.

In her speech time yesterday, Mrs. Speech found out if she held her finger under Lillian's nose, Lillian could make a very clear S sound. It was AMAZING! It goes directly to evidence that her plalate needs more work to function properly. As hard as news comes that I'm not prepared for, I have unbelievable joy in just hearing the "ssssssssssss" singing from her teeth.

Sometimes I wonder if I should update on her blog as soon as I am able to, because I so don't want to sound like Debbie Downer, BUT, it is my hope that no matter what someone is going through, there is ALWAYS hope. If there is someone just beginning this journey, perhaps they will find comfort here. I write what is REAL, what is happening here in my insignificant life and hope it brings glory to God, because I know it all works for His good because I love Him. That is my hope.

Friday, July 1, 2011

Plastics Update

We waited a little over an hour for the Dr to come in and say, in less then three minutes, that Lillian is too immature and too delayed to even attempt studying the mouth/speech problems. All along, we have been being told that Lillian's speech is impeded due to her structural problems. Not that I know anything whatsoever, but I'm not sure how he can tell just by looking at her that she is too delayed to try the study. He assured me that he is very experienced in this area, which I have no doubts of, but it just seems like I'm missing something. I am SO disappointed, and that would be an understatement. I feel crushed. He went on to say it could be YEARS before she was up to doing the V&E. He told me there was no reason why she shouldn't be able to speak, so it was her brain development that is the problem. He sees that she is receptively there, but not able to get it out. He told me he didn't want me to be I just blurted out that I am discouraged. I then proceeded to cry and try not to cry so I could try and make sense of the things he was saying. Which made me feel like a complete idiot. He didn't seem to be at all impressed with the speech report I'd given him. He didn't even read it prior to making his decision. He then went on to tell me that he did these types of surgeries on kids who were 13 and 15 years old. If that didn't just want to make me puke. He also said her tonsils are pretty big and perhaps they should come out and that should not have any bearing on her speech...once again, contradictory to what the ENT has said. Also, we've seen three different doctors in the last month and all of them have had a different opinion on the size of her tonsils. It is mind boggling. Are they big or not? Then I feel like, if not one person can agree on the size of her tonsils, how much of what we are dealing with in the area of her speech is subjective? So, the car ride home again was brutal. Struggling to just accept it, really what other choice so I have? I was smacked in the face, again, with how hard this journey is. What a roller coaster. I felt, again, that overwhelming pressure of thinking how hard it is to bear at times. I remember on her first visit back to the developmental peds clinic, the doctor saying that her life should not bring our lives to a screaming halt. That the world did not revolve around her. Truth be told, when you have a special needs child the exact opposite happens. The dynamics of your family change, your finances change, it affects every single aspect of your life and sometimes, its a hard. Very hard.
My wounds are gaping and hurting right now, so please understand my venting. Sometimes, I just need to. As always, I'm thankful, just hurting. God is good all the time.

**something else I remembered...he also stated her tonsils are big enough, that if he did do more work to her palate, they could cause her airway to obstruct again.