Alessandra’s Site

My Week in the Hospital

Tue, 4 Aug 2009 00:57:04 -0700

We’re Home

Mon, 3 Aug 2009 23:36:45 -0700

I can’t even begin to explain how I feel right now. Even though it is still tough and there are ups and downs that keep me on an emotional roller coaster, moment to moment sometimes, we have gotten past the hardest part and are home with our little girl. I am exhausted. If I have time to add an entry... then I should probably be trying to get some sleep. My husband was wonderful last night and did all of the middle of the night wake ups and let me sleep. I was able to sleep for 8 hours with only a couple of very brief wake-ups. It was amazing!
We got home around 7:30pm and had a wonderful dinner waiting for us that Al’s Mom had prepared for us.
Although it is wonderful to be home, it is also quite stressful. We have to figure out how, where and what positions are best for her. We are also in charge of making sure that she gets her pain meds round the clock on our own now. We have to make sure that she is protected from being bumped by anyone. The change, alone, can be quite overwhelming. I hate to see my daughter suffering, yet I know that the suffering would be so much more later on if it weren’t for this surgery. You see... up, down & all around. Sometimes I don’t know weather to cry because my girl shouldn’t be having to go through this right now or to jump for joy at where we are from where we have been.
We have a long road to recovery ahead of us! But it IS a road to recovery. We have SO many more blessings than hardships. There’s no room for doubt or negativity. She is strong in body, mind & spirit. She amazes me at every turn. I can only take a breath, thank my Heavenly Father for His provisions & for blessing me with the privilege of being the Mother of such amazing children!
For now...
~Paula *()* (That’s my tired, yawn face.)
Good night... or should I say, “Good morning”?

Alessandra or Wolverine?

Sat, 1 Aug 2009 19:48:59 -0700

“I am praying for all of you too and I hope that I will be over with this soon” - Alessandra (thanking you all for your support and prayers as well as sharing her heart.)

Hello Everyone,
Al here.
Paula is taking a MUCH needed nap. She’s been 24/7 for the last three days and she’s exhausted. I’ll take this small window and update Alessandra’s blog. We are so very blessed to have such supportive family and friends. My mom and dad are in town and they’ve been helping with logistics, we’ve had a ton of family and friends visit and even more friends pray and send their love our way.

On to the particulars:
We thought we’d post some more pictures of Alessandra...of a kind. You can see her femur on the left and her tibia on the right. Each bone had an intra-medullary device (or steel rod for us normal folks) “placed” down the middle of the bone. The surgery was part Star Wars tech and part medieval barber/blacksmith project. The end result, as you can see, is unbelievably clean. We have a girl who will have a better opportunity at a more full life. (Once the weeks and months and hard physical therapy work go by.)
We thank The Lord, our families, all of your prayers and support, and Dr. Hayden and the rest of the team here at OHSU/Doernbecher.

The last few days have been very difficult for Alessandra, but each day has met us with both new challenges and new successes. She is now free of her epidural, her catheter, and we are now focused on trying to get her as mobile as possible. Apparently, the sooner she can get mobile immediately following her surgery, the sooner and more complete her recovery can be.
Day one was all about shock recovery, and pain management. Yesterday and today continued that and evolved to being more about mobility: Which meant four of us moving her from the bed to a wheelchair for a tour around the grounds. Alessandra is improving, slowly but very steadily. I am wonder-found by her toughness. I’ve always known that I loved my kids. I seldom stop to think how much I respect them.
I for one have been long-term-impacted by Alessandra. Through her ordeal and her unwavering faith, God has given me perspective and I thank Him for that. Of course, I wish that He had chosen a different way of helping me with that but I learned some time ago to not question His choices.
Paula and I know that The Lord has destined Alessandra to impact so many in ways that we could never. As much as it hurts us and her...So be it. (said with tears)
We anticipate returning home on Monday sometime. Alessandra misses our home a whole lot and she can’t wait to get back. Please join us in prayer for that.

We hope to update y’all with some more pictures.

Day after Surgery

Thu, 30 Jul 2009 21:22:28 -0700

Alessandra’s surgery yesterday went well but it was long and intense. 5 hours! This was a HUGE surgery. They got done what needed to be done. We’ll try to post the x-rays as soon as we get copies of them. The last 24 hrs has been very difficult. This has been the day to regulate and figure out what works for her to keep her pain down enough so that she is comfortable and willing to put some effort into moving around a bit without making her so drugged up that she doesn’t want to do anything. Also making sure that she gets good peaceful rest so that she can be strong and alert when she is awake. We are on the road to that at the moment... it seems. This is the toughest part of it all!
It has been an exhausting day for all of us!!!
Right now she is resting peacefully and her pain seems to be under control.
We don’t have any good photos yet. She has asked us to, “please take them later”. We have a video clip of her on the “Happy-Loopy Juice” that they gave her before wheeling her back for sedation and surgery. It’s pretty funny. But we can’t post it without her permission.
Please pray that:
*Her pain will be managed well.
*Al & I will be able to get the rest that we need.
~Paula

Surgery Is Scheduled

Fri, 12 Jun 2009 04:09:14 -0700

Well... our hopes of having her surgery towards the end of August in order to maximize our summer didn’t work out. Her surgeon will be on vacation for that whole month. We were able to get her scheduled for surgery on July 29. This will take place at Doernbecher and she is scheduled to stay for 3 days following. We have her pre-op appointment on July 21st where we will get all of the last x-rays and scans done and will meet with the doctor to get the in depth play by play of the procedure and get all of our last minute questions answered.

Blessings:
*Surgery will be here in Portland.
*We finished up with school a couple of weeks early to make up for the lost weeks of summer after her surgery.
*We are confident that we have a great doctor and hospital to go through all of this with.
*Al’s getting 2 weeks disability to help with her care. What a relief!!! There will be a LOT of lifting needed in those first two weeks and I would not be able to do it! She’s only a couple inches shorter than me now. Last time it took both of us to lift her because I had to keep her leg stabilized so that it wouldn’t get bumped. She was MUCH smaller then and it was difficult for me. I think we’ll have to call on Alex for more help with that this time.
*Al’s parents will be able to be here for the surgery. We’ll have 4 days to have fun with them all together before the 29th! It will be so nice to have them around helping out with everything! It will be all consuming just caring for Alessandra, especially at first. Thank you Papa & Mom!
*This should make bridging into Alex’s Sr. Yr. Water Polo season much more smooth since we will have more recovery time before it begins. (We are all heavily involved in supporting Alex in this, It’s something we all enjoy and look forward to.)
*Alessandra should be able to get back into the water to start swimming again about 2 weeks after surgery... as soon as the stitches are out.
*We have all kinds of fun trips and activities planned for the next 6 weeks!!! Camping in Malibu, Ca... camping at the Oregon Coast... retreat to Le Pine, OR... strawberry picking (and any other fruit that blooms before July 29th)... zoo... OMSI... swimming... golfing... Fun! Fun! Fun!
*We have a great health insurance plan that will cover most of the expenses of this procedure.
*God is good! ALL THE TIME!!!

Prayer requests:
*Peace for all of us as it gets closer to the surgery. The anticipation can get a little overwhelming at times.
*For continued regular weight bearing right up to the surgery. We need all of her healthy bone tissue to be as strong as possible!
*For patience with her physical limitations. She’s... well... 8 and Alessandra... need I say more? It is important that we keep close watch and make sure that she doesn’t over do it.
(Pain = problems with weight bearing = not good.)
*She has been having quite a bit of pain in the last week and has had trouble sleeping. Pray that this will resolve itself quickly so that we can fully enjoy all of those fun things that we have planned.

Thank you! Love, Hugs & Prayers for you all!

~Paula

Preparing for Next Surgery

Mon, 6 Apr 2009 09:50:35 -0700

Hello everyone! There is a lot of information to give, so please be patient and bear with me.

Here are the basics of it:
Alessandra had some bone scans done in February. Her growth plates are almost completely fused together which means that she won’t be growing much more. (We pretty much reach our full growth potential when our growth plates fuse together. Here is a link to a very basic description if you are interested : http://www.bbc.co.uk/science/humanbody/body/factfiles/bonegrowth/femur.shtml ) This is what we were waiting for to schedule her next surgery. The scans also showed that her Tibia (shin bone) is also very weak and full of fibrous tissue. Which means that she will be needing a surgery on that bone as well to help strengthen it. We made a plan with her surgeon to wait until July in order to give the growth plates a chance to completely fuse together.

After seeking council from Dr. Stanton in Florida, the opinion of other trusted physicians and much prayer, we have decided as a family that it would be best for Alessandra to have her surgery done here, in Oregon at Doernbecher by Dr. Hayden. We feel comfortable with him and have a deep peace about it. This will also put her in the same building as her physical therapist during and after her surgery. (Not to mention the many doctors and nurses that she has there too.)

The plan for surgery is to hollow out the tibia and femur bones in her right leg and to add steel rod down the middle of the entire bone. They will shorten the femur so that her right leg will be the same length as the left and will bend the steel to correct the slight deformation that has happened at the top of the bone so that her right will match the left. This should do wonders in giving her more stability when she walks and taking a lot of pressure off of the spine.

Here is an email that I just sent to her orthopedic surgeon this morning:

Hi Kayleen & Dr. Hayden!

Alessandra has been doing really well lately and we are looking forward to making the most of our summer with her before she has her next surgery. We were wondering if we could go ahead and schedule her to have surgery toward to end of August? We were shooting for July but she is looking forward to participating in a summer swim team program that ends mid August. She has been participating in a swim team prep program and is loving every moment of it! We also want to maximize our family activity time in the beautiful Oregon weather before the summer ends, if at all possible. If she starts to have problems and the surgery needs to be bumped up, we will do what needs to be done, at the point.
She has been mostly up & around. We have had a couple of days here and there where she was too exhausted & used her wheel chair all day to rest. But has claimed to have little to no pain. We aren't sure that we believe her all the time, though. Sometimes we can tell by how she's walking and how she winces when she puts weight on her right leg when she doesn't think anyone is looking. In those times we have to force her to get in her wheel chair for a bit to rest so that she doesn't over do it. A little rest seems to do the trick. We are also keeping her in the wheel chair in large crowds and if we are out for a long walk. But even on walks, she's getting out and walking for large portions of it. So we're getting a lot of weight bearing on that right leg... hopefully building up that good bone tissue so that the surgery recovery will be easier for her.
We hope that everything is going well with you & we look forward to hearing back from you soon!

Sincerely,

Al & Paula Cubillas & Family

We will update anything new that comes up or changes. Until then, we will hopefully get some entries in here about all of the fun things that we’re doing together.

Love & Prayers to you all!

~Paula

Our Beautiful Alessandra

Thu, 13 Nov 2008 11:02:26 -0800

Okay... so... We have had a wonderful last four months. She has been almost pain free & very active! We even got to do a little bit of bike riding... on flat ground and for short periods of time... but we got to do it... together! It was wonderful! Camping, swimming, playing in the sand at the beach, we had a great summer! Getting her on & off the sand part of the beach was tricky but we did it a few times. The rest of the time she & I would drive to a nice spot were we could park right by the sand while the rest of our group would go off and play and it ended up being really special time for us. When she would get tired, we would just get out the wheel chair and have her rest up for the rest of the day and normally she would be back up on her feet after a good night’s rest. It was really encouraging after having such a hard winter & spring. It was also refreshing for all of us. The weight bearing has helped instigate healthy bone growth in her leg. The fibrous tissue is still there, but the surrounding bone tissue is stronger.
Fall has been a little bit harder for her... she started having some pretty severe pain about 4 weeks ago. After resting it up for a couple of weeks, her pain was gone and she was back to her normal, monkey self. Her physical therapy has been going well and every time we go there seems to be something new to work on. We are so grateful that we have such a great therapist working with her because he notices things that could potentially develop into very serious issues and gets her doing exercises to try to reverse things before they become serious. She loves “Dr. Dave”, as she calls him, and the freedom that she has in the gym during PT.
We have given Alessandra the spare “family plan” phone to have with her at night, so that she can call us in the middle of the night if she has pain and needs help with anything. On Monday morning I got a call from her saying that she had fallen off her bed and couldn’t get up because her leg hurt. We have been having her rest it this week but she still has not been able to put any weight on it. Last night she was asking for pain medicine because she has been waking up several times during the night from discomfort. This morning I got another call from her, asking for more Ibuprofen because it seemed to help. But... she has decided that she doesn’t want to get out of bed today. She wants to rest her leg so that it will get better more quickly. An hour after that she said that her pain was getting worse. I called her orthopedist and she is scheduled to see him on Tuesday. Until then we are to keep her as comfortable a possible. If it gets worse, then we will take her to the ER & they will do x-rays to see if there is any immediate danger and get her comfortable with stronger pain meds. Tricky... tricky... tricky.
So we rejoice in the time that we had to rest and recoup. And we pray for wisdom for ourselves and her doctors. We rejoice that she is such a spunky-fun-loving little girl who brings life and laughter to every situation. We pray that she will heal quickly and will be strong enough to wait until her growth plates fuse together to have another surgery. We pray that we will be able to continue on with our family vacation plans... and if they have to be changed or altered, that we will be able to have a good attitude about it and that God will provide other exciting opportunities to arise because of it.We praise God because she has a wheel chair that can keep her pretty mobile while still resting her leg. But most of all we are thankful for another beautiful day to love our children and spend time building memories with them.
That’s it for now... Love & Hugs to you all.
~Paula :)

***If you are interested, here is a link to some photos of Alex’s Water Polo team. He’s the goalie. He’s cap #1. His team is in the State semi-finals tomorrow. Go Wildcats!

http://marcuri.smugmug.com/gallery/6126367_9c9x9#385352085_gc39G

If the link doesn’t work, just cut and paste to your browser.

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 :)

Oh So Toothless and Cute

Wed, 9 May 2007 00:21:26 -0700

Isn’t she cute all toothless and everything! I love it!
Okay...now for the update. Alessandra’s right femur, the one that she had surgery on has been bothering her lately. Enough to where her limping is pretty severe at times and she actually complains that it hurts...inside. So we made another trip to her bone doctor to find out what’s going on. The Dr. says that the bone is week because of the fibrous tissue but they have made it as strong as they can without interrupting the growth plates. Our best course of action is to try to keep her from putting too much stress on it and to try to keep her off of it when it is bothering her. That, my friends is a much bigger task than you might think. Try to keep a little girl off of her feet who earned the nickname “changita” when she was just learning to walk. (Which means “Little Monkey Girl” in Spanish) We’re in the process of getting handicap parking permits and a handicap ID for her. We are trying to get her used to walking with her walker and we are trying to get her used to the idea of using a wheel chair or wagon when we go places where we’ll be on our feet for long periods of time. She’s not too happy about this idea. The important thing is to protect her leg while it is doing well so that she doesn’t get to where she has pain. Because pain most often means that there is a problem.
As for her hormonal & growth issues....we will find out more for sure in June. It looks as if her puberty hasn’t slowed down at all...but the blood tests will show more fully what’s going on there. We’ll let you know when we find out more.
Thank you for all of your prayers! God is with us!

Shot Day again.....

Fri, 23 Feb 2007 15:27:08 -0800

And she still loves me. ☺We actually had to go to the doctor’s office for her last shot because our new insurance company had to work some stuff out before they would cover us doing the shot at home. She wanted me to do the shot because that’s what she’s comfortable with. So the nurse watched as Al and I did our thing. Pretty amazing, huh? Al told me to have the nurse do it since we were there and I get really nervous and a feel a little sick to my stomach every time I have to do it. But I wanted to do whatever made it easier for Alessandra. It does get a little easier each time (at least for me).
Okay.......update on everything else. As for her bones........she has healed really nicely from the surgery. The Fibrous tissue is still there and is growing back into the places where they put in the bone graft. But this was expected and it isn’t growing back too quickly so it has definitely worked to give her more stability for the time being. She does have the fibrous tissue growing worse in several of her other bones and showing up in some bones that we haven’t seen it in before. It is not sticking to just one side of her body as it was before, which is more usual for this disease. But then we’ve never been a family of “normal” have we?!
*Hee! Hee!* Nothing seems to be in danger of deforming or breaking at this time. Her right Fibula looks as if it is weakening and starting to deform a little. But isn’t at a point where she would need surgery on it yet. The Orthopedist feels that we should give it another 6 months before we check it again and 12 months to check up on everything else. We will also be having x-rays on her skull in 6 months to make sure that the fibrous tissue hasn’t developed there.
Now onto hormone issues.........the 7.5 mg Lupron shot every 4 weeks did not even slow down the puberty so they have increased her dose to 11.25mg. She will have more tests in June to see if it’s doing any good. So for now we wait.
The great news is that she is feeling great! The shot doesn’t seem to have any bad side effects except for hurting when I give it, even at the higher dose. And no more surgeries for now. That may all change with-in the next 6 months, but we are so thankful that she is doing wonderful right now!
As I finish reading this update to her she gives me a giant hug and exclaims, “You’re the best Mom ever!”
Well honey, “You’re my best Alessandra ever!”

Pray for Gabriel Ward

Wed, 7 Feb 2007 09:25:56 -0800

Instead of giving an update on Alessandra right now, we would like to ask for prayer for Gabriel Ward and his family. Gabe has CML and will be entering the hospital tomorrow to start procedures for bone marrow transplant. His mom is Paula’s best friend here in Oregon and we are all very close to this family. This is one of those things that is every parent’s worst night mare and they are about to experience it first hand. Here is a link to his web site: www.caringbridge.org , click on “visit a CaringBridge site” and type in: gabrielward.
To Steve and Lisa- We love you guys! We are believing with you that God will hold you up and get you through this.
(The photo is of Alessandra & Gabriel a little over a week ago at The Caring Cabin)

It’s A Snowy Day in the Neighborhood!

Tue, 16 Jan 2007 16:41:09 -0800

The whole neighborhood is covered in snow, everything is closed because of poor road conditions and it is beautiful outside! Alessandra got outside for a while and helped us all build snowmen. She did great! She is outside with her sister right now helping to create “snowball snow cones” for the kids in the neighborhood. (Perfectly round, clean snowballs that they pour Gatoraid or syrup over and eat.)
We are all well now...except for the left over coughing fits here and there...but that can hang on for a while. We will be at 5 weeks since the surgery tomorrow. Alessandra is eagerly anticipating getting back in the pool in one week.
I hope that you are all well and enjoying your winter too!

It’s bath day!

Sat, 6 Jan 2007 13:10:33 -0800

Alessandra’s healing is moving along really well! This is a copy of her most recent x-ray. Pretty cool, huh? Her bone is looking stable and the incision is looking good too. We’ve had a little bit of a set back with a cold/cough flu going through our home. This is the first in six days that she hasn’t been completely wiped out but her voice is still gone, she is still running a low fever and her cough is still strong, although it is getting better each day. This has thrown her desire to try to progress in her mobility out the window for now. So we have been kind of at a stand still on that for the time being.
We sterilized the bath tub so that she could take her first bath since the surgery and she was so excited about that! We were originally told that it would be 6 weeks before she could soak in a bath. But her incision looked so good that her doctor said that she could take one. We’re going to wait the full 6 weeks before we take her to a swimming pool though. Lot’s more germs there.
You can pray that Al, Alessandra & I continue to heal from this flu and that Alex and Cassandra will remain well.
God bless you all and Happy New Year!

We’re Home!

Wed, 20 Dec 2006 01:17:18 -0800

We have successfully completed our 3rd day at home from the hospital. Alessandra is doing amazing! We went up and down the stairs the way that the physical therapist showed us to, twice today. Our biggest problem at this point is keeping on top of her so that she doesn’t try to do too much on her own, get ahead of herself and fall or trip. She is getting quite confident and has to be watched very closely. It is great for her to get back to doing as much as possible on her own but she needs someone close by to assist her whenever needed. This can be exhausting for us at times since it doesn’t really give us a lot of time to do anything for ourselves. We are all tag teaming though and making it work. I did have to have a talk with her today about considering others feelings too. Just because she’s feeling better and wanting to do more doesn’t mean that everyone else has to jump immediately when she wants something. She needs to be patient and give us some time and space too. She felt bad, apologized to us and did better for the rest of the day. She only had her pain medication one time today......yay! We are trying to save it now for when she has to try new exercises that might cause her extra pain and for when we go out. We are hoping that we can figure out a way to get her out of the house tomorrow....but are a little hesitant because of how crowded it is everywhere right now. We’ll see.
Al and I are starting to catch up on some of our missed sleep thanks to Al’s father who is visiting and helping out with things around the house. Alessandra only woke up once last night to go to the bathroom which she cannot do by herself yet...especially when she is groggy.
There’s the update. I’m sorry that it took me so long, but I was waiting for Al to load the pictures that we took at home to my computer to attach to this journal entry.

First Steps - Movie

Sun, 17 Dec 2006 08:42:25 -0800

She Walks!!!

Thanks again for your prayers. This shows Alessandra’s first steps during her second day of physical therapy. (A H264-QT 7MB)

She is doing great. She will be walking with a walker for the next few of weeks and then we will graduate her to crutches. For extended outings we also have a cool wheelchair.

She’s not flying around yet but knowing her by the middle of next week she will be using her walker as a pommel horse.

Daddy’s Little Girl

Thu, 14 Dec 2006 00:20:33 -0800

My First Entry.

For everyone who is keeping up to date with this blog and who voiced their support...A heartfelt “Thank you”
We so very much appreciate your prayers, support and well-wishes.

This has been difficult for of us. Not because we don’t trust God to get us through this but because it would be unnatural to feel OK about our kids being hurt, poked and prodded.

Simply put. I love my little girl. I love all my kids and I wouldn’t want any of them to be hurt intentionally for any reason. Yet we’re here signing indemnification forms and requesting that Alessandra go under the knife. It just feels wrong even though we know it is the right thing to do.

I didn’t do well today personally. I shut down, in fact. I was riding on a wave of hurt and anger. In my head, I knew I should trust God but I was too emotional to function. We had several family members who made time to hang with us in the waiting room and I was borderline rude to them. Sorry Guys. Thanks for being here.

We’ve really felt the Lord’s hand in this. From the surgeons telling us that things went better than planned. To the x-rays showing us our new healthy adamantium-laced-femured “Six-Million-Dollar Girl”. To a more positive prognosis for her future bone development. And to top it off ...
“Daddy, I just wanted to tell you that I love you and that I’m so glad you and mommy got married” This was the first coherent sentence that Alessandra whispered to me after coming out of the anesthesia. Whatever despair I might have been feeling throughout the day was utterly erased in one sentence. I fancy myself to be a tough guy but I was putty in that moment. Alessandra had just gone through a difficult major life event and she wanted to make sure that I was OK.

I love you too, Pumpkin and I’m glad I married mommy too.
-Daddy-

Surgery Complete

Wed, 13 Dec 2006 23:42:35 -0800

We have made it through surgery! She did great and the everything went very smoothly/just as planned. Her x-rays are kind of cool. She’s like the Bionic Girl. I don’t know how cool she thinks that is at this very moment......but we’ll see later when she’s feeling better. She woke up after with a lot more pain than I think she had anticipated and was in tears until they got it all under control. This was heart breaking for all of us as we have never seen her struggle with physical pain like this. But she is stabilized right now. She was able to eat at about 9:00pm for the first time. She had been dreaming of having peanut butter and jelly on WHITE bread after her surgery and that’s just what she got. Gooey grape jelly oozing out all over the place!
We will try to keep this regularly updated through her healing process. Tomorrow she starts physical therapy and has to get out of bed. That is NOT something that she wants to do right now. So keep praying!
We know that it was God’s grace that held us up through today.

The Final Count Down

Sun, 10 Dec 2006 21:35:50 -0800

Okay........we have reached the final countdown until Alessandra’s surgery! (3 days and counting) She had her bi-annual check up for everything related to MAS and we are awaiting the final results to those tests. Some things look to be progressing in the wrong direction but I have decided to wait for a complete update until we get through this surgery and we have the test results back. It can all be such a roller coaster at times! It did look as if she had two fractures in her femur from all of the pressure in that bone so it is really good that she’s having surgery this week! The trick has been to try to keep her off of her feet as much as possible. Any of you that know her know what a task this must be! She has done pretty well though. We have explained to her why and she has really tried to be careful. We let her come outside today and be with us as we put up Christmas lights outside and she was limping quite a bit more by the evening just from that little bit of being on her feet. But it did her so much good to be outside and with us! We are praying for health and wholeness in our household. For the surgery to be smooth and successful. For Alessandra to come through it with as little discomfort as possible and for God to do a miracle in her bones. She has many other areas where the fibrous dysplasia is taking over. Although they are not as much of a threat because they are not primary weight bearing bones it is still a problem. We will be pursuing further investigation into these other areas of her body with her orthopedist after we get through this surgery and the healing process. We love you all! Thank you for your prayers, love and support!

Strep Throat Yuck!

Mon, 4 Dec 2006 12:27:09 -0800

I need prayer!!!! I am exhausted! I think if you put all of the chopped up hours of sleep that I’ve gotten in the last 5 nights it might add up to 2 1/2 nights sleep. I was getting something out of storage on Thursday and injured my ligament or something in my quad. So I’ve been limping around or on crutches, elevating, icing, wrapping, etc since. The doctor wants me off of it as much as possible for the next two weeks. We’ll see how that goes.
Just when it was looking like my leg was going to allow me a good nights sleep Alessandra came down with a fever. The last two nights it has gotten as high as 104 & 105 so I’ve been up the majority of the nights monitoring her to make sure that it goes down and doesn’t get that high again. She hadn’t had any symptoms other than fever until this morning when she woke up with a sore throat. I checked her tongue and tonsils and it looked like the classic symptoms for Strep. I took her to the doctor to have it confirmed. Her surgery is next week so we are praying that she will be completely healed from this by then. I have been successfully fighting off a cold/throat thing until now. The no sleep thing just isn’t working for my immune system.
On top of all of this...Al has been out of town on business since Thursday. I didn’t feel it necessary to make him rush home for this but am looking forward to his return on Tuesday!
Between this and the weakness in Alessandra’s leg/hip we haven’t been out and about much. We are having to be very careful about the environments that she is in so that she doesn’t end up getting bumped or jumping around too much and break her bone before surgery. Of course this could easily happen at home too......but we can monitor her better here.
Waaaaa! Waaaaa!.......Okay I’m done boo-hooing!
I’m off to correct school work papers and then snuggle up with Alessandra for a long, cozy nap! ☺
On a happy note.......the craziness of life has had no choice but to shut down for now, so I have gotten some amazing quiet moments with each of my children in the Word, playing games, doing crafts, reading, snuggling and just hanging out. Which seems to be fewer and further between these days. What a blessing...especially during this time of year when it is normally so hard just to get the family to stop and focus on what it’s all about.
Oh...and I got this web site finished....finally!
(See what God has to allow me to go through to get me to pause.)
Verse for the day:
Mt 11:28
"Come to Me, all who are weary and heavy-laden, and I will give you rest.

Bone Surgery

Sun, 3 Dec 2006 03:22:58 -0800

Alessandra’s Fibrous Dysplasia in her right femur has grown to the point that there isn’t enough bone tissue left to support her body weight sufficiently. The bone is splintering and starting to deform which is causing her to limp pretty badly at times. (She never complains of any pain....but we can tell how bad it is by watching how she’s walking.) So she will be having surgery on Wednesday December 13, 2006 to have a metal plate installed along one side of the bone that will be set in place with pins inserted into the good bone sections. This will help to give her the support and strength that she needs as she grows and will help to keep the bone from deforming any further. This has been watched very closely for the past couple of years so the deformity is very minor at this time. They will also be attempting a bone graft....but are certain that this will be unsuccessful because they haven’t yet had success with this in any other MAS patient. But it’s worth a try....if only to give her bone a little more support for a short time. (according to the orthopedist)

Shot Day ☹

Sun, 3 Dec 2006 03:04:53 -0800

Here we are again! It seems to creep up on me every time! Four weeks really go by fast nowadays. Today’s shot was kind of awful. Al was out of town on business. Alex was at a birthday party and it was just Cassandra and me. Alessandra was NOT happy that her brother and Daddy weren’t home to distract and comfort her!!! Cassandra tried, but was ready to burst into tears and out of the room before I had the shot in the room. Alessandra sensed this and started crying before I even got near her. All in all the shot got done with more tears than normal but with her holding very still and cooperating. We got some Groovy Girl Mini dolls at the toy store and shared an Odwalla drink at Starbucks with some cuddle time. But we don’t want to do that again without the men in our home there to add support and comfort. (Al’s heart ached that he couldn’t be there for her!)

Precocious Puberty

Thu, 30 Nov 2006 00:10:20 -0800

Well...in June the doctor was noticing a significant change in Alessandra’s maturation process and decided to have a hormone release test done on her to determine if Centralized Puberty had been triggered. It had. This means very basically that her brain was confused from all of the hormone exposure and had triggered real, full blown puberty. Yes the medicine that she takes every day is suppose to keep this from happening, but somehow enough hormones had been released that it overrode the medication. So...the next step in treatment is to add the Lupron shot that tells the brain to stop puberty.
We went to the hospital so that Paula (Mom) could be trained in administering the shot every 4 weeks. This went well and she has been doing this since. We try to make it as exciting as possible for her to lessen the “yuckiness” of it all and to encourage her to be calm and hold still during the injection. We take her to the store and let her pick out a “shot gift”, we try to let her pick something that she’s been really wanting that’s affordable. We have actually had her begging to have her shot early just so that she can have her gift because she didn’t want to wait.