Alessandra’s Site

Back to weight bearing...

Fri, 18 Jul 2008 14:17:24 -0700

Alessandra’s femur has healed as well as it can with the fibrous tissue there. So she is back to being able to bear weight on it as much as she can tolerate without getting too tired. She would like to think that she can handle more than she can, but I think that she is starting to acknowledge her weaknesses a little bit more in the area. That is a big step for her.
We heard back from the doctor in Florida. GREAT news!!! The hardware in her leg is still stable and doesn’t look like she needs a surgery at this time. We should expect that it will fail in the near future... but for now we can at least feel okay with making plan for this summer. That’s a relief!
She still has to be careful and use her wheel chair most of the time when we are out (& sometimes when we’re in). We just have to watch her closely to make sure that she doesn’t over do it. Any little bump could potentially cause another break or the failure of the hardware... but we are trying not to stress about that and just enjoy what she can do at this time in her life. We’re trying to let her be a little more free in her activities without compromising her safety and I figure if she gets hurt... we’ll deal with it then. It could happen with her doing nothing.
So there you go! I have SO much more to tell you all, but I’m out of time right now. I’ll try to post more soon.
Love & Hugs to you all!
~Paula

Broken Femur...

Sat, 14 Jun 2008 01:12:23 -0700

Well...we have another break that will restrict our activities a little more for the time being. Her right femur has some sort of fracture most all the time, because of how weak it is, which is why she is in a wheel chair most of the time. But this time the bone cracked all the way through to the rod which they put in her leg to give her stability. The good thing is that the “hard wear” (the rod & pins... we call them bolts) has most likely kept it from cracking all the way through and separating or crumbling under the pressure. So there will be no cast this time... just lots of rest. For now, she is not allowed to put any weight on it for two weeks. So we have had to cancel our Disneyland trip... yet, again and save it for another time. We will still go to visit family in Southern CA for a week and we have plans to make it as fun as possible. We are all disappointed, but are more concerned about her well being than anything else. She is having a great attitude about it all. She is focusing (or trying to most of the time) on the positive instead of the negative. My sister has a home that will be very comfortable for Alessandra to get around in her wheel chair and a pool that she can spend as much time as she wants in because water is her “safe place”. She can still swim...YAY!!!!! We just have to make sure that she only stands on and uses her left leg to push off of any surface while in the pool.

We have a new doctor that is overseeing her orthopedic care for now at Doernbecher (OHSU). He is supposedly an extremely good surgeon which means that he is very busy and difficult to get in touch with. This can be more than a little frustrating for us at times. But God has worked it all out for good and we have been able to get the information and care that we need without extra complications so far. We have mailed out her x-ray CD to a specialist in Pensacola, FL. We are very anxious to speak with him and get his opinion on a treatment plan for her. We may need to travel there to see him. He was recommended by NIH as the #1 option to get in touch with for the bone part of her disease and has worked with many families with MAS. This is HUGE considering how rare her disease is! He will be at the Magic Foundation convention this year in July. Al and I really think we should go, but it is suppose to be a bonding time for the entire family with other families around the world who are dealing with the same disease. We don’t see how we can afford to take the whole family. We aren’t sure if we can even afford to go ourselves with the gas prices and airfare being so high. So you can pray that God will somehow provide for that if it is the right time for us to go.

We have applied for a guide dog for Alessandra through the Canines for Disabled Kids organization.
(http://www.caninesforkids.org/) We are waiting to get medical release forms from them so that her physical therapist can be released to send her history to them for the trainers to look over as they seek to train a dog to help meet her specific needs. When & if she gets approved, we will be responsible to raise $10,000 to cover half of the cost to raise these special dogs and the travel costs to go to Princeton, MA for her one on one training before we take the dog home.

We have a LOT going on right now and a lot to pray for. I try not to think to hard about any of it because it can feel like my head is going to explode with “how’s” & “what if’s”. I have to take it, not one day at a time, but one moment at a time. Every beautiful moment of giggles, snuggles, hugs and love from each of my children. Every precious moment that I can look into the eyes of my husband and see myself being loved, honored and cherished. We have so much more to be thankful for every day!!! God is always good and He always provides. I am going to try to update more often, especially with so much going on. Maybe that’s something you can pray about too. *Hee! Hee!*

Blessings to you all.

Love & Hugs,

Paula

Lots to Pray About

Thu, 10 Apr 2008 00:00:00 -0700

As you can see Alessandra has her new pearly, hot pink wheel chair. This is a definite blessing and will be very helpful as she grows.

I am attaching a letter that I sent to her endocrinologist which is a pretty good update on what we are dealing with right now.

Pray. Pray. Pray.

“And we know that in all things God works for the good of those who love Him, who have been called according to His purpose.”
Romans 8:28 ~NIV~

Hi Dr. Marks!

We are at a turning point in Alessandra's orthopedic care. I was wondering if you could do some research for us and find out if there is a doctor somewhere that is qualified to oversee her case. It doesn't have to be in Oregon and we are willing to travel if need be for surgeries if & when needed. I don't know if you have looked at her most recent x-rays on her right femur... but it is pretty amazing how much the FD has progressed. She seems to have more and more difficulty walking and is wheel chair bound more often lately. Dave Oleson in CDRC has been working with us and has been wonderful! We know that it takes time and patience in building those muscles properly, but we are not okay with waiting any longer for Dr. Beals to "maybe" return and it seems that there aren't any other doctors that are qualified to oversee her case. She is in need of further x-rays of her spine to see what is going on there as well. It also looks as if her growth plates are compromised at this point and we need to speak with someone who can go more in depth as to what this might mean for her future and if there are any new procedures that might be beneficial to her & her future. All in all.... we want to be in touch with the best doctors possible to help us follow, understand and treat her needs as they arise so that she can have the best possibility of being active as an adult. Her bones have progressed more quickly than Dr. Beals expected and he seemed to be stumped at this point as well. This is a concern for us as well, since we know what an amazing doctor Dr. Beals has been.

We also wanted to let you know that we are seeking to get a Service Dog for Alessandra. The idea came to me when my friends dog took a very gentle and protective stance in front of her to keep her protected from the rambunctious children and dog around her. It was very cute and pretty amazing how she sensed that she needed help and protecting. This brought the idea of seeing if she would qualify for a service dog and upon further research we found that she is a prime candidate. The dog that gets placed with her would be trained to meet her specific needs... helping to keep her balanced when walking or getting up at night, recognizing when she is getting fatigued and needing to get back in her wheel chair, making sure she stays in her wheel chair when she is in a environment that could be dangerous for her, taking a protective stance to keep her from being fallen on or knocked over, etc. And she would have a "friend" that goes with her everywhere she goes and grows with her, learning her special needs as they arise. Obviously we will need the support of her doctors and therapists in this endeavor. We are also going to contact our insurance company to see if they will cover any of the expenses in this process.

Thank you for being so available to our family! We are struggling with all of this. She is our baby girl and she has been through so much already. Yet... she is probably the least concerned and worried about her body. Only slightly frustrated when it "inconveniences" her in what she wants to do. We are mostly positive and know that she is in God's hands. But it still hurts our hearts to see her struggle.

We feel so blessed to have you and so many wonderful people working with our precious daughter and family at OHSU!

Sincerely,

Paula Cubillas

The Large Cast Is Off... YAY!

Sat, 2 Feb 2008 19:47:41 -0800

The x-rays looked really good! Her bone seems to be doing what it should to heal properly. There is a little bit of concern that she has some fibrous tissue that looks like it might be running into where the fracture is. They will have to take extra precautions because of this. Which means... as long as it continues to heal like it should, she might have to stay off of it a little bit longer than they would normally prescribe and maybe wear the walking cast longer. Oh ya! Her large cast is off and she now has a removable “walking” cast. Which means she can take baths. Wooooo Hoooooo! Other than that... she’s not suppose to have it off. Strict orders from the Doc. (I had to promise in order to get the removable one instead of a half cast.)
She still isn’t suppose to bear much weight on it, but they wanted her to work on bending her knee and getting flexibility back there. They said that it could take a few weeks because it can be severely painful at first. I joked saying, “Just watch... she’ll be bending it fully in 2 days.” Guess what? One day! That’s our girl! (God is so good!)
She is getting around well in her wheel chair and is very comfortable in it now. She should be getting her permanent one within the next month. Approval has gone through from the insurance company only for us to find out that the company filling the order is out of network. They are working on trying to get the cost down for us as our portion would be about $350 in network and is about $1300 out of network. BIG difference! She won’t be able to use this one until she has her cast fully off though as it doesn’t have the elevated foot rests. It’s more for simple mobility.
We are awaiting the results to her blood tests to see if the medicines to balance out her hormones are still working. Outward physical signs seem to look like it is. Some of her growth plates are starting to fuse together and her bone age is at 13 yrs. Yes... it does freak me out a bit that my 7 yr. old has about the same bone age as my 12 yr. old daughter. But this is to be expected with her disease. Dr. Marks seems to think that we have another 2 maybe 3 years of growth before all of the growth plates fuse together and she stops growing. At that point we will stop her hormone meds and let her naturally go into full puberty. We believe and pray for the best. Right now they are projecting that she will “most likely” reach 4’10”. One inch shorter than me. Although that’s all in God’s hands, really! There’s no way for them to know for sure.
Prayer requests:
Dr. Beals- Head of Orthopedics at OHSU, really the most qualified to handle her case has had some sort of emergency and will be out for a month or two. They are not sure what will happen after that. Not even his personal assistant has been given the reason why he is out. I’m pretty sure he’s in his 80’s. Pray for him and his family.
We need clarity as to who we should contact for continued care and monitoring of Alessandra’s bones if Dr. Beals is no longer available. There aren’t very many doctors that can recognize fibrous dysplasia on x-rays.
Alessandra had a very bad dream and hasn’t slept in her bed or alone for over a week. We are planning on transitioning her back to her own bed tonight. Pray for peace and comfort for her. That she will be able to feel the protection that she knows God gives her all the way to her very core! In Jesus Name!
That everything will go through quickly and smoothly with her new wheel chair and that her leg will continue healing as if there weren’t any fibrous tissue there.
For continued peace and joy even when things don’t work out the way we would like them to.
Wisdom for all of the doctors that are dealing with all of her care.

We know that God IS in control and we know that He has a wonderful plan for our lives and our beautiful Alessandra!

Broken Tibia-Ouch!

Sun, 16 Dec 2007 17:06:51 -0800

We are back up on the web site. Yay!!! I am copying the letter that I sent out and will update as soon as there are any changes.
(The picture is mirrored for some reason. The cast IS actually on her right leg and the door that’s behind her is to the right of the Christmas tree when you’re looking at it. I took the picture with my computer...maybe that’s why.)

Hello to all of you!

For those of you who don't know... Alessandra has fractured her Tibia (shin bone) all the way through. Being the monkey that she is; she decided that it would be fun to jump from bench to bench (or “vench” as she would say it) in the locker room at the gym, with wet feet. We got a fun little ride to the hospital in an ambulance and she has a pretty pink cast from her hip down to her toes. It is her right leg where she has Fibrous tissue so until we talk to and meet with her orthopedist... we will not know what this means for her healing. I have not been able to get in touch with Him yet. I'm pretty sure that we will have to wait and see if her bone will heal on it's own with the cast and if it looks like there is too much fibrous tissue and it will be too weak, then we will probably have to schedule another surgery. This is life with Alessandra. God has given me such a peace about all of this. We are doing what we have learned to do with all medical things concerning her... make as much fun out of it as we can. She is in a wheel chair almost all the time right now so she gets a nice warm sponge bath with massage on her back side every night from Mommy to promote continued blood flow. She really likes this! I turn the lights down and put on relaxing music to make it feel like a spa treatment. We get to do fun physical therapy exercises to make sure that she's still working on building those abs and the muscles in her left leg and the rest of her body. She is enjoying having everyone sign her cast with silver markers. So.... there you have it.

I have not been able to access her web site to update it for several months because it was set up on my old computer, which I don't have anymore. Al has not had the time to reconfigure things so that this computer can be authorized to update so I'm sending a mass e-mail and will update the web site as soon as I can get access again.

Because of all of this I am unable to get as much done as I would like at this time of the year... but I am making the most of every moment that I have with my family. God has blessed us and I am really enjoying all of those little moments that can easily go unnoticed and are actually BIG life moments. Alex is in 10th grade and Al and I are feeling the time spinning faster and faster to the end of the tunnel where his adult life will begin. This is a beautiful thing but we are really feeling desperate to make the most of every second we have with our children! Then we realize that this is what we should be doing anyway!!! Which we forget sometimes in the hustle and bustle of life. We may not be able to do all the things that we have on our "lists" but if we have taken the time to really KNOW our kids, to encourage them to be the beautiful people that God created them to be, have taught them to love unconditionally and to respect others, and have taught them to love the Lord and follow Him with all their heart above everything else... well we have made the most of our time with them.

We are in God's hands. Alessandra is in His hands. That's all I need to know. Today is beautiful and I have another day to enjoy all those "little"- BIG moments!

Love to you all!

Paula Cubillas & Family :)