doctor days

Waiting for the doctors...

tired girls

Learning how to do the stretching exercises/ French Method of Therapy

stretching Ellie's feet

Taping

stockings for the splints

making the plastic KAFOs (splints)

molding the KAFO to be custom fit for Ellie's feet and leg

8 days old & already on her second pair...

the one on the right was Ellie's first KAFO - created Monday for her.

The one on the left was created today - you can already see progress being made based on the shape of the new KAFO!

exercises & taping (Ellie is wiped out & sleeping through it at this point)

I'm exhausted. I just finished Ellie's last exercises of the day, got her splints back on successfully, and am ready to feed her. I am about to get ready for bed and then will feed her again at midnight as we watch the Dallas lights. It won't be long until we are watching the sunrise once again over Dallas.

I actually enjoy our feedings during the middle of the night - it's so quiet and I often doze off with her warm body next to mine. Precious moments. I know it is fleeting. I also know that these moments were not promised to me and so I am thankful. Tired but oh so thankful to be tired because I am privileged to feed my daughter. I do not take it for granted.

We saw Ellie's local pediatrician here for the first time yesterday. I wanted a local pedi for my kids so that Ellie could get her shots and well checks on time for these first few months that we are in Dallas and so that I would have someone to take Will to should he get sick. This doctor was recommended by our local OB and is conveniently just about a half mile down the street. We really liked him. He was knowledgeable about Ellie's conditions. He was loving in the way he handled her. He is referring us to two more specialists including a pediatric opthamologist who we will see while we are here. I mentioned to R that normally, learning we should see more specialists would stress me out as I would recognize that it would include another plane flight, coordinating schedules, etc. I am thankful for the opportunity to be here long enough to see the doctors we need to see in town without the stress of travel.

As of 1 week old, Ellie has only lost 5 ounces! She is doing great and he was very pleased. We see him again next week.

Monday, we spent 6 hours at Texas Scottish Rite Hospital for Children (TSRHC) with Ellie. These are familiar grounds to us as Will is a patient there. In fact, we love TSRHC so much that we fundraise for them annually as a part of the Dallas White Rock Marathon. You can join our team, "Where There's a WILL, There's a Way" and support by running, cheering, donating, or just wearing your shirt at home. Check out our website at: www.wheretheresawillrace.blogspot.com for more info.

I digress. Again.

It was weird to be there without Will. I was relieved, however, to be there at all after my experience being trapped in the shower. (See post below.)

We met with Ellie's orthopedist and he examined her and consulted with us. He sent us for x-rays which were very difficult on my heart. Will has had x-rays but only of his hands and feet. Ellie's were of her limbs but also of her spine and neck from multiple angles. It was very hard on my heart because we had to hold her very still and flat on her back - Ellie is never flat on her back. She always rolls to the side. I think it may hurt her to lay flat. We also had to angle her neck up which seems to cause her great pain. For each scan, my heart would just cry out the body part with a "Please, God." I can't really seem to put my prayers into words anymore. Mostly I just groan and beg and plead. Yesterday, I just kept crying out, "her spine, Lord, please... her neck, Lord, her neck." I wasn't telling him what to do with her body. He knows my heart. He knows my ache for her. He loves her and created her. He understands what I can not even put into words.

Thankfully, her x-rays did not reveal any abnormalaties at this time of her neck or spine. The doctor thinks her positioning of her neck and spine at odd angles is due to soft tissues.

We were given a choice about treatment methods for her feet and legs. We chose the French Method of therapy. It has the same success rate as casting but is gentler. It is also more time intensive on the parents. But it allows me to bathe her a few times a week. I have long thought I wouldn't be able to bathe Ellie much due to casting. I am so happy to be able to bathe her now every few days. It lets me cuddle her easier and is more comfortable for her. If it doesn't work, we will do casting. She will likely require surgery at some point between 3-6 months. Her feet were ranked as far as the severity - she scored in the "severe" category - just one point shy of "very severe."

We began the French Method Monday as well. Thankfully, Ellie's therapist is the same therapist who worked with Will & I when he first received his prosthetics. Bless her heart - she has certainly seen some tears from this Mama. I hate covering up my babies' legs. I am constantly reminding myself that this is to give my child independence - that I am doing the best thing for them. But it breaks my heart to watch them hurt and be uncomfortable.

Parts of the therapy Ellie really enjoys - the specific exercises feel like massages to her. We do these at home 3-5 times a day and she really likes it.

We will return to the hospital every other day for exercises, taping, and splinting. Today's appointment took just under an hour and a half. It actually felt short compared to Monday's! I was much more relaxed this time too. Eventually, we will wean ourselves from the hospital and go less often. The initial process should take about 3 months. I'm not sure of the plan at that point. My understanding is that maintenance will become the norm for therapy then.

We see hand doctors soon to learn the extent of Ellie's wrist and elbow and shoulder involvement. At this point, we are thinking it is only her wrists that are severely affected on her uppers.

I'm not sure what the treatment plan will be for her uppers as far as therapies, splinting, etc.

I keep harrassing every single doctor with a quivering lip about whether or not her CNS is affected. So far, no one can tell me for sure. I just want reassurance that she will live. They believe she will - they are encouraged by her nursing reflex being present and her ability to open her eyes for awhile. But there's not a specific test to do that will say for sure if her CNS is affected or not. Basically, we will watch for developmental things. One doctor did note that it is a good sign that she is doing so well internally - we aren't seeing organs shutting down. We just have no idea what caused her muscles and joints to not work effectively.

At x-rays, two women gave me some grief about being out with a 6 day old. I told them it wasn't by choice. I'm recovering from major surgery (Will, by the way, is now pretending that his tummy is cut open, his ankles hurt like Daddy's except that Will doesn't have ankles, & that his uterus hurts.) And yet, despite the fact that I am recovering, I don't have the time to lay at home in my pjs. I am going every day to doctors or therapy. I want to get Ellie on a consistent schedule and am doing my best but we spend a great deal of time away from home and her bed. I want to play with Will but my mental energy is non-existent most of the time.

I am struggling with feeling so overwhelmed at what life looks like for Ellie. I want a plan. I want to know what to expect. I want to know what to dream for and believe in. Today, I asked her therapists if they thought she would be able to walk or if they thought she would require a wheelchair. I'm okay with a wheelchair- it still gives her independence. I just want to know what to plan for. And no one can tell me. They don't know how strong Ellie will be. It's a little hard to predict at 8 days old! I don't take milestones for granted. I am well aware that I am not guaranteed that she will walk or run or feed herself, etc. I am trying to believe she will... but I know it will come at a price. She will have to work so hard.

I am overwhelmed at the amount of therapies required. I am overwhelmed at the number of specialists I am accumulating. I am beyond overwhelmed at how I will do life with two children with disabilities and their own unique needs/doctors/therapies/equipment/etc.

I feel guilty. I feel guilty feeling overwhelmed. I feel guilty crying because I hate covering up my daughter's legs with plastic. I feel guilty if I feel sorry for myself at the insane number of appointments I have. I keep reminding myself of all the points in my pregnancy at which doctors sat me down to tell me that things did not look good for Ells - that she might not make it, that I should contact photographers and make plans to enjoy doing things with her in the belly because she might not survive out of it. I remember vividly the point at which her edema at 26 weeks indicated a possible early delivery that week and packing my bag in tears. I remember when we were undergoing testing for a blood disorder that would have given her 18 months to live... and when I became sick with grief and lost it completely on our study bathroom floor. I remember begging God for her life. I remember going numb with grief. I remember. I remember. I remember.

So how dare I struggle with her life.

I have friends who have lost babies. I can imagine their grief because I was told I might lose Ellie. But I do not know their grief. I have not lost an infant.

And so I feel guilty if I have pain right now. I feel guilty for grieving the loss of dreams, the change in plans. I feel guilty for wishing Ellie didn't have to go through so many challenges.

I know my blessings will be greater. I am confident of that based on the last 3 years raising Will. I don't feel entitled to grief since Ellie is alive.

But my guilt for my feelings doesn't change the fact that I have those feelings.

Do other moms of kids with disabilities or special needs struggle with this? Do others feel like we aren't entitled to grief or feel pain because we should just be glad our baby is living?

I can't deny how I feel.

I am beyond thankful for her life. I love her hands and feet and muscles and joints. I love her heart with those mysterious masses. I love her long hair and her blue eyes and her precious nose. I love her smell and her noises and her warmth. I love her cry and the way her lip trembles when she is really sad. I love the snorting noise she makes when she is really angry. My heart breaks at the squealing painful cry when she is hurting while being dressed. I love her more than I realized I was capable of. I am so grateful to have the opportunity to get to know her. I don't take that for granted.

But I also struggle. I grieve that she has such challenges in life ahead of her. I grieve that she will know cruelty - at such an early age. I have grieved as I have watched Will be bullied and teased and stared at. I know this will happen for Ellie too. I pray that she will handle it with grace and humor like her big brother but that doesn't take away the pain. I grieve that I can't really relate to her - I don't know what it is like to hurt every time someone lifts my legs or dresses me because it hurts to move my muscles. I don't know what it is like to go through casting and endless therapies. I can't really relate to my daughter on certain issues.

I grieve that though I am her Mommy, at 8 days old already there are things I can't fix for her, things I can't explain to her, challenges she must face.

I grieve that she doesn't get to see her Daddy daily because he has to be at home working and we are hours away so she can get medical treatment.

I grieve that there are so many "what if's" still with Ellie - especially because we don't have a definitive diagnosis or cause. We still have a few more specialists to see and we have certain things we are going to monitor - like her hips and her heart. I want to just cross things off my list but I can't yet. I am confident I will be able to at some point but right now, it's a long list. I can't tie everything up with a little bow because the pieces don't all fit - Ellie has baffled her doctors and they can't answer all the questions she presents. And it is completely different from her brother's syndrome which just furthers the questioning. I'm so tired of not having answers.

I grieve that I have no idea how I am going to do life with these precious children. I require more help than the average mom and my independent nature hates that. I want to play and to cook dinner and be a normal family but I don't know when to find time for that with everyone's therapy and doctor schedule.

And so I find myself on this bizarre roller coaster of emotions, this see-saw. I vacillate between feeling such joy at her mere existence, gratefulness for her life and general health, and pain at what she must endure and overcome and go through in order to do life effectively. I want to just enjoy her now but I feel like I am having to fight for that right.

I told R on our way home from the hospital Monday that I feel like a punching bag. I feel sometimes like life just punches the heck out of me and yet I pop back up, find something to laugh at, enjoy life for a bit, & take another punch. I keep popping back up but I am bruised and worn out.

And yet, I keep remembering how thankful I am for my Ellie girl.

Who is now reminding me that it is 21 minutes past feeding time. And we need our beauty sleep.