A Trip To The Mall

So, this week marks the end of March, which only leaves April to come in like a Lamb. It also means that Ivey’s second birthday is fast approaching. I can’t believe another year has passed. The days before Ivey are memories of a different person living my life. Two years ago seems like it was a lifetime ago and this past year is but a flash behind me.

Someone told me a couple of months ago that parents of special need children begin to truly come out of the fog around the second year. Maybe so; at least it feels like it. One thing for certain, there is still a long journey ahead of us. However, now I can honestly say that I look forward to the future. For so long the certainty of ‘tomorrow’ was suffocating, actually depressing. Now I am finally wrapping my head around the acceptance that our days are full, they are busy, they circle around medical yip-yap, but they are good.

I went to the mall a few weeks ago in a rush to try and grab Easter outfits for the boys. I was in a panic trying to be prepared for uncertainty. Ivey’s seizures have increased significantly in the past three weeks. That particular day marked the end of 72 hours of at least 7 seizures. I had not started Easter shopping so I frantically rushed out to the mall in the event a catastrophe was in the make. The dreaded ‘other shoe’ seemed about to drop and a hospital stay seemed possible.

There were two older women, probably in their late sixties or early seventies walking the mall. Maybe it was a flash of my future, maybe it was me making something out of nothing, maybe it was God saying slow down ‘this is only one day of thousands’. But with the two women was a girl (with special needs) probably in her late thirties in an adult stroller. The women were wrapped up in conversation; the girl was smiling.

I did what I hate for others to do. I stopped. I stared. They didn’t even notice. I fought back tears.

They were not sad tears or even happy tears. They were just tears. Tears from an indescribable emotion that wells up every so often. Part of me wanted to approach the woman and tell her how much I admire her. I wanted to ask her to tell me ’how to do it for a lifetime’. I wanted to ask her if she still has days like this, will there always be these moments. I wanted to tell her friend how special she must be. Another part of me breathed a sigh of relief that the future will still be the future. A twinge of regret reminded me how different my future will be from that of my friends and how Ivey’s future will not be like that of her brothers. Mostly, I smiled through tears at the image of myself with silver hair and orthopedic shoes strolling or guiding Ivey through the mall with a friend also with silver hair in pants with an elastic waist band – all three of us oblivious to our surroundings with many years behind us – uncertainties still ahead of us – but living a life well deserved.

If you watched the video first, you probably saw a little girl playing with a toothbrush.

Yes and no.

She is playing with the toothbrush. What is great is that she (actually we) have finally found something that she loves to hold. It has taken months. We have tried spoons, drum sticks, spatulas, whisks, more toys than you can count and finally the toothbrush. She loves it. It is still a little heavy, but she hangs on to it until her little hand gets tired.

Ivey’s favorite ‘thing’ to chew on is her thumb, which you have all seen in the video. She loves it so much there is an awful blister on it right now. Second, her shirt, which ever she is wearing at the moment – mostly the sleeve. Third, fingers, but I think most people have learned there lesson when it comes to fingers. Now…the toothbrush.

What you may not realize is that Ivey is actually learning in this video. We have been teaching her about object permanence. Objects are all around her even if she can’t see them. All of you moms have sat your baby in the high-chair, given them a toy just for them to drop it over the edge over and over and over. That is one way babies learn about object permanence. Just because they drop the toy doesn’t mean it disappears. Ivey must learn this concept also, only on a much LARGER scale.

So what you are also watching is Ivey playing with the toothbrush then reaching out to the bucket. If you notice, I show her where the bucket is, and then she continues to look for it. When the toothbrush hits the bucket she hears it and she is also feeling the vibration from the toothbrush a little more intensely. She touches her face, eats the toothbrush, ‘looks’ for the bucket, then starts the process all over again.

Ivey at work always amazes me. I love it, living in a world I never knew existed, being part of something so great, being in a world beyond my own imagination.

And knowing that she will have pearly white teeth is always a plus.

Motivation

Sugar Thumb

A toothbrush

Ivey's Second Birthday

Ivey Update

Update:

The past two weeks have been full of appointments. Last week on Wednesday alone Ivey had three appointments. She went to her BEGIN class at the Center for the Visually Impaired (CVI). One of our main goals is to encourage Ivey to reach out beyond her comfort zone. Pretend that Ivey is in a little cylinder and beyond that is a strange land for her. We want her to become comfortable and trusting that she can explore away from her body. So when playing or interacting with Ivey, let her become secure with you. Then you can encourage her to reach out to objects or toys - guide her as you do so. If you know Ivey, she loves to play with long hair, rub scruffy faces and chew on everything attached to her (bids, shirt sleeves, tubes or socks), we want her to feel or hear something new and be curious enough to 'find' it.

Her prosthesis were also enlarged by her ocularist. Now her little eyes fit better and for the time she is having a hard time getting them out by herself. So for a day or so we were back with the conformers. I forgot how different they make her look and how they attract attention for others to look too. I also discovered that her pinching skill has refined itself since her last set of conformers. She had no problem pinching the stem of the conformers, pulling them out and placing them in her mouth to chew on like a piece of gum. Talk about your choking hazards. But she is back with her beautiful green prosthesis now....again, the ocularist mailed them to me. Eventually those things are going to wind up in the wrong mailbox - what a surprise that will be.

Wednesday morning of last week Ivey had another seizure. More than likely this was just a break-through seizure. She is down to the lowest doses on her phenobarb, which we are weening her off of, and apparently she had gained a little weight, so a seizure managed to get through. Wednesday her neurologist squeezed her in for a look-see. All is well and we upped her other seizure medication.

So, Stacy thanks for sticking it out with us on such a long day! I don't know what I would do with out you! And thank you Lauren, Allison and Shelia for helping me with the boys. Life savers!

Then....on Thursday of last week, the next day, we drove back to Atlanta for an appointment with her cranio-facial surgeon. This was just a follow-up to check her left eye from the procedure this past January. Looks great. Eye fits better. However, he is wondering about an other little issue that MIGHT be a concern with her skull. We are being proactive and checking things out. Therefore, a CT scan is being scheduled for her little head. I will give you more detail if something were to come out of this; in the meantime, say a little prayer that her skull is okay.

Now on to this week. There was only one appointment in Atlanta. Ivey had a follow up with her ENT (Ear-Nose-Throat). She was scheduled to have an ABR hearing screen on her left ear. The ABR performed in January needed to be repeated because of fluid and swelling in the ear. The physician would like to try and get an accurate as possible reading on her ear(s) to know exactly what ranges Ivey can hear. Well, unknowing to me, her left tube was plugged and fluid was behind her ear. It was a no go for the ABR on the left ear. After a round of antibiotics hopefully we can try again. More than likely she will need to be sedated the next time.

We did test her right ear again. Her right ear seemed to do well; however, not as well as we would hope for. The audiologist did put us in the booth to see how Ivey responds to sound. It was eery to hear the sounds that Ivey can hear(and probably not as well as I can hear) and to watch her not respond to sounds that I can hear. It was like being punched in the stomach when I could hear a sound that she could not. All of this has a good and bad side to it. Now I have a better idea of what sounds Ivey can take in and those she can not. This will help me to adjust my voice and activities if possible. For example, Ivey probably can not hear me when I whisper to someone or hear me (you) if we are talking normally in another room. She also probably can not hear birds chirping. THIS WAS ALL BASED ON HER REACTION TO TESTING HER RIGHT EAR. She did not respond to any sound when we were testing her left ear in the booth. She is NOT deaf in her left; it has much more hearing loss than the right- as far as we can tell right now. So, once we get an accurate ABR screen, then Ivey can get hearing aids adjusted specifically for her hearing loss in both ears.

Well, that is our Ivey update for now. She is still doing great. She has a smile on her face and playing with her brothers. Next week is Knox's birthday, so we are all looking forward to that big milestone. I just ask that you all look at some of Ivey's specific concerns and say a little prayer for her. Ask that we all have the strength for whatever might come our way.
Gwen