Hip Surgery is Scheduled

I received a call today from the Orthopedist. Elle's surgery to correct her hip-displasia is scheduled for October 2nd at 8:30 a.m. We have one of the best Orthopaedic Surgeons and hope that this surgery will give Elle the flexibility to move her leg in a way that will make sitting possible for her. We still have the Neurological issue that hinders her, but we feel that correcting the hip will help. It will also allow her the ability to walk without a limp when that day comes. Dr. Loveless will preform an open-reduction and femoral shortening. Basically, a section of the femur will be removed allowing the ball at the top of the femur to be brought down and aligned with Elle's hip socket. Her hip socket is still very flat and will have to be hollowed out. The ball is then properly positioned. Elle will then be placed in a Spica Cast. Although we have not gotten the final word, I believe she will be casted from the waist down. She'll remain in the cast for 6 weeks!! We will need to get a special car seat that is designed to fit the cast. Needless to say, it will be a very long 6 weeks. More details to come.

A New Doctor & A New Approach...

We are still in the learning stages, but in short, we were put in touch with a new Doctor. Unfortunately, she is in Michigan. Her approach to helping Elle will be a mix of eastern & western medicine. In about 3 weeks, we should have the results from some metabolic testing that she has ordered. The goal is to find out how Elle's body metabolizes what goes into in, what, if anything,she is deficient in and much more. The end result will hopefully allow us to learn what her body may need to increase brain power. What is getting in the way of her ability to focus and track? What will help her with communication and comprehension? And of course...can we gain better control over the seizures?

We will also have some labs drawn locally for b vitamins, MTHFR polymorphism, zinc, selenium and vitamin D.

Dr. Freeman has also suggested we start Elle on a complete gluten free ,dairy free diet. Here is what she had to say...

"She (Elle) can still get adequate vitamins and minerals from almond and rice milk, many children with food sensitivities to casein (milk) are also sensitive to soy. Removal helps to reduce intestinal dysbiosis, and inflammation that results in leaky gut. Intestinal health is also aided by the use of tumeric/curcurmin. This can be used as a supplement or in cooking. It does have a strong taste. Lee Silsby has a good product ENHANSA, that we could use from the capsule in her food. I suspect she would benefit from increased glutathione which we can provide in the form of a cream or supplement. All of this should become clear on the testing. Taurine is an amino acid, that while not classified as an essential amino acid, can under certain circumstances act like one. Several studies have shown Taurine to be deficient in children with seizures. It is ideally adsorbed sublingually, I would suggest starting at 2 drops 2 x per day, under her tongue of the product from American Biologics."

Well, that's it in a nutshell. Basically, the testing will confirm the above or enlighten us to other things. In the mean time, we wait. This is always the hardest part. Unfortunately, most blood & gene testing moves at a glacial pace.

Elle is now 17 months and continues to suprise us daily. She has become very good at using her sippy cup. She has begun to reach to the tray on her stroller for the snacks I strategically leave there. She will actually see something on the floor next to her and reach for it, pulling it to her mouth for further examination :-) Elle is constantly on the move. She rolls all over the living room. Her team of Therapist are still trying to learn if Elle rolls to learn her boundaries, because she is bored or because it is her current mode of transportation. She is doing great at getting both feet to her mouth. If all is quiet in the house and I call her name, she will stop what ever she is doing and flash a huge smile that says, without words, "I hear you mommy, I love you." Brings tears to my eyes just to write that, but I know it's what she's thinking. While on her tummy, she will pull her knees under as if she were going to crawl, but the front end is still flat on the ground. To me, this action tells me that the thought to coordinate this movement in there. We know Elle is physically strong enough to get up on all fours...her brain just doesn't know it yet...YET !!

There is not a day that goes by that my heart doesn't hurt for that little girl. i can stare at her all day...her little teeth, so straight and perfect, her bright eyes, long beautiful eyelashes I envy, a smile that fixes everything and little hands that when they touch you...it's indescribable.

Stuck !!

>


We had a rather busy morning with therapy and a stop by the grocery store. When we got home, I gave Elle a bottle and put her down for a nap. I had a feeling she may resist the nap since she fell asleep in the grocery store. She drank her bottle and drifted off for a bit. Every now and then I would hear her stirring. Nothing out of the ordinary. We'll little did I know, Elle was working on something. After a few whines that were unfamiliar, I quickly went in to check on her. I found her on her tummy with her legs through the rungs of the crib. No big deal, she does it all the time. When I went to pull her forward and turn her over, I quickly realized why this was different. Little Elldini had squeezed her chubby little legs so far out of the crib that the rungs were now past her knees and she was stuck! When I pulled the crib away from the wall to free her little legs, I realized that I couldn't push her forward...this was going to take more hands. I pushed and pulled for about 5 minutes only to realize what I already knew...this was going to take more hands. I thought, "am I going to have to call the Fire Dept to cut her out?" Fortunately, my wonderful neighbor across the street was home and came running when I called...literally, in her bathrobe with her 3 kids trailing!! Together, we were able to free Elldini and for the first time in over a month, she cried :( I think they were tears of joy over her freedom! So yes, babies legs can get stuck in rungs. I can hear my mother-in-law now..."I told you so" :-)

Elle's Follow up from the Neurologist & Ophthalmologist

Part of Elle's care is that she is seen by her Neurologist every 3 months. You'd think they would play a pretty big part in her care since she has a brain disorder, but to be honest...all they due is monitor her medication that is prescribed to treat her seizures. I will say that I like Dr. Hammond, however, he is very traditional and claims to be unaware of any leading-edge treatments for either preventing or controlling seizures. I do think he means well, I just wish the first line of defense, for any disease or disorder wasn't medication. Anyway...we discussed all the things that Elle CAN do and he felt that based on those things, there was a good chance that Elle could learn to sit unassisted. It would take time, but he felt we would get there. He also suggested increasing her current dose of Keppra by another .5ml but I declined. "Let's see where we go", I told him. If what we are currently taking has no side effects and Elle had a seizure once a month, then right now...we choose to accept that. The alternative is adding another anti-convulusant drug and weaning her off the Keppra. I really don't want to start "playing" with meds. Nothing new to learn from this appointment.

On to the Ophthalmologist, Dr. Hunter. Of all Elle's Dr.s, we like him the best. He is straight forward, kind, and restored successfully restored Elle's sight. During this check up he dilated her eyes & confirmed that the inner ocular lens implants are perfectly aligned and he doesn't feel that Elle will need glasses until she is of school age. Elle will most likely need to have Eye-Muscle surgery when she is 2 to straighten her eye. It is turned 20 degrees and anything over 12 requires surgery to be realigned. Over all, a great check up!

Elle is currently on a waiting list with Dr. Loveless for her hip surgery. By the 2nd week of August we should have a surgery date. Most likely for October. We are hoping that this will give Elle even more flexibility and enable her to position herself in such a way that she can have a more stable base when sitting. We are working on sitting about 5 times a day. We seat Elle in the Boppy and get her hands on the floor next to her, palms down on the floor. Once she is stable, we give her a medium sized ball. Elle is able to position her both hands on her own onto the ball. She rolls in towards her feet and back for a bit before falling over. She is tolerating it much more and we are hoping that this will help build a connection for her. She is physically strong enough to hold a sitting position, it's just such a highly coordinated skill that her brain hasn't yet caught on. It will, we know it will. Kuddos to Andy for figuring out the trick with the ball. Daddy comes up with some pretty good ideas :)