Ellie's Heels

Well, we went to see the Orthopedist today to get casts on Ellie's legs, but walked out with a surgery date instead! After looking at Ellie's heel cord and weighing the options, we decided that it would be better to just jump to the surgery option.

Surgery will be next Thursday at the hospital. They are going to try to do it with just local anesthesia, but want to have her at the hospital in case complications arise. It is a small incision in each heel, not even requiring stitching. They make a small clip in each heel cord, allowing it to stretch to full range, and then she will be casted for a couple of weeks while it heals and stretches.

I'm confident that this is the right decision. Ellie has been fighting this problem since birth, and all the non-invasive options just did not do enough to correct the problem. I'm only sorry that we were not referred to an Orthopedist earlier!

The doctor also looked at all of Ellie's ortho situation, including her spine and hips. These are very important areas for severely disabled kiddos. There is a high risk of the spine curving due to lack of support, and of hip dysplagia due to contractures in the hip area.

Well, we found out that Ellie has the early stages of both :( For the spine, the Dr is recommending a special brace that will offer support when she is in upright sitting positions (mainly her wheelchair). The extra support will hopefully help her spine stay straight. For the hips, the Dr is recommending trying botox injections, this time in the hips. This will hopefully relax things and allow the hips to remain in the correct position. 

I was not surprised by either of these things, but disappointed that these troubles have begun. But we are no stranger to such things, and will take them as they come. I'm relieved to know about the problem and be in the care of someone who can help us prevent further damage.

Thanks for checking in!

Emily and Ellie

Ellie

Ellie has had such a good winter so far! She has had a sinus infection and a couple of really small colds. She is on a maintenance dose of an antibiotic to prevent recurring infections, particularly sinus and ear infections. But besides that, she had not needed any additional medications this winter. She has not even been to her pediatrician since October. Praise the Lord for such a strong, healthy girl.

There have been a few new things for her though. First of all, Monday she got her first shots of Botox in her calves. Ellie has had a tight heel cord since birth. Her foot wants to stay in a "toes pointed" position and it is very difficult to get her foot to a 90 degree angle. We have combatted this since birth with foot splints, AFOs, and lots of stretching. But the last six months things have gotten tighter. This coincides with other tightening in her arms and legs, but also progress such as smiling and cooing. So, there have been some good things that came from her increased tone, but also bad things. We finally needed to address the heel cord problem when she started to get skin break-down on her heel.

The Botox shots, more commonly used for cosmetic reasons, will relax her calf muscles, in turn allowing us to stretch the heel cord and gain more range of motion. We are praying this will work well for Ellie as the other option is surgery to clip or lengthen the heel cord. We also have an appointment with an Orthopedist who will decide if some casting of Ellie's heel will help as well.

Another new thing for Ellie is that we have been pursuing getting some daytime nursing for her. I have been working with agencies, red tape, and paperwork trying to get some nursing approved for her for about 4-5 months. Things are finally moving forward, and I am starting to get optimistic that it might actually happen. I have had a nurse here a couple of full days this month, and it has been incredible for me and the boys. We are able to enjoy and spend time with Ellie, but without all the extra work of equipment, feedings, treatments. We have also been able to leave the house and do some fun things. 

It has been quite a journey for me learning how to care for a special needs child, meeting her needs as well as those of the family and also myself. We went from night nursing when she was an infant, where I felt displaced in my own home, like my motherly duties were ripped from me. I know it was necessary at the time, as her needs at night were too much for us to handle, but I had a hard time bonding with Ellie, always wanting to prove that I could do it myself. 

We then went to no nursing, which I think was great for our family. Ellie was on the same schedule as us, the boys started to open up to her and be more comfortable with her, and I felt like I gained confidence in taking care of her. 

But since Hannah passed away, I have felt the need to take care of myself and the boys more actively. I was just surviving, torn between caring for Ellie and caring for the boys, never feeling like I was doing a complete job on either end. I also could admit to myself that cleaning out a suction canister was not necessary for me to show I love Ellie :) Someone else could very well do the many tasks of cleaning and suctioning, and I could still hold and enjoy my little girl. So this led me to finally surrender and ask for help. We shall see if and when that call gets answered.

It is interesting to look back at all the emotions we have had and lessons we have learned from Ellie. She has taught us so much about life, ourselves, about accepting help. I have a feeling the lessons will continue. 

Ellie at the dentist

Ellie went to the dentist yesterday. I was so nervous about how it was going to work with her trach and suctioning and everything. But it went great! She was the perfect patient and got a good report on her teeth :)

New Chair

Ellie received her new indoor chair today. We have been waiting for this for a while. It will enable Ellie to sit at the table with us while we do school, or eat dinner, or play games. It also adjusts up and down, so she can be near the ground to watch the boys play, or up high by the counter. I'm excited because she will be able to be more involved in all our family's activities.

Ellie talks to her mommy too

I think there is a rumor going around that Ellie likes Adam better than me. Okay, I probably started that rumor ;) But I thought I better post some proof that Ellie talks to me too :)

Hannah

This morning I am reflecting on Hannah's funeral and how beautiful it was. It truly celebrated the victory that we have in Christ.

I have been meaning to offer DVDs to those who were not able to make it to the funeral. So please, contact me if you would like me to send you a DVD of the funeral service and a program. I hope it will be a blessing to you as it was to us.

Death is dead
Love has won
Christ has conquered

And we shall reign with Him
For He lives
Christ is risen from the dead