Miss Alyssa
Alyssa Walks Out of the Hospital
Alyssa in Rehab - Continuation
It took Alyssa about a week to come out of her shell but now she has gotten into the groove of being here at the rehabilitation hospital. Her day starts with Breakfast Group at 8:00 AM with the other kids but, not being a morning person, this is the toughest part of the day for her. But, once she eats her soggy Frosted Flakes (her preferred way to eat them), her day begins with a variety of therapies and activities that fill her schedule from about 10AM to 3PM each day.
Most fun for her though, has been Alyssa's transformation into a Social Butterfly.
During her free time she roams -- actually, wheels -- up and down the hallway of the Pediatric unit talking to nurses, other patients, parents, the cleaning personnel, staff -- really anyone that will talk to her. So, it is appropriate that her custom leg brace that she just got has a giant butterfly on the back of it.
Just in time for her to really get comfortable being here, Alyssa's discharge date is now scheduled for Tuesday, July 2nd. She has done really well here and daily her motor function improves so it is time to go home!!
We are planning to have a welcome home party for Alyssa, date TBD, and would love for anyone who can attend to join us.
Alyssa Goes to Rehab - Day 5
Alyssa is doing fabulously well in rehab. Before stariting her rehabiliation, she kept saying, "My arm is dead." Now she is saying, "My arm is waking up... it is just sleepy" which is a great metaphor for how her brain is re-wiring itself. She is starting to grasp with her right hand, cross her arms, wash her hands, walk up steps, and today, we played a game of Miss Mary Mack.. All Dressed in Black.
This past weekend was also particularly great as she and dad spent lots of time out of the hospital just doing regular things...going to dinner with friends.. hanging out with family... shopping.. In fact, just doing 'ordinary' things, things that we all often take for granted, has helped in her continuing recovery.
Iinterestingly enough, Alyssa doesn't seem to miss home too much. This is likely due to the fact that she is showered with attention, love, toys and best of all, has her own room! It also helps that much of home has been brought to Alyssa including the 24/7 presence of mom or dad.
Tomorrow Alyssa will be casted for a leg brace which will help her steady her right leg as she begins to regain her walking function. The hospital has also given us a preliminary discharge date of July 3 which is just 2 short weeks away. Looking at the other patients here, I know she will walk (not roll) out of the hospital doors.
A continuous thank you to all the visitors, gifts and gestures of support. They mean so much to us and (although you wouldn't know it from her feisty behavior) to Alyssa as well.
Alyssa Goes to Rehab - Day 1
Yesterday, a volunteer came to play with Alyssa (Candy Land, of course) while she was transitioning to the hospital. She, herself, had been in bicycle accident a year earlier where she had damaged her temporal lobe and had lost movement on her right side. To see her now, a year later, it is really amazing. She has expericenced a 99.9% recovery of her right side.
Alyssa's bandages were also removed and this latest picture (sort of) shows her quite impressive scar.
Post Surgery - Day 7
We are being told that Spaulding Rehabilitation Hospital is the best place for pediatric rehabilitation so we are going to take a tour there tomorrow with the expectation that she will be discharged from the hospital on Wednesday. The length of this rehabilitation is undetermined at this point but either way, because Alyssa's walking is quite wobbly, she will likely need a leg brace in the short term so that she can prevent hyperextending and injuring her knee.
Alyssa also made friends with her roommate today who, up until today, has been pretty much out cold post-surgery. She, too, had had a mass removed from her brain at the base of her spinal cord. Come to think of it.. all the kids in this hospital ward have had their heads cut open for some reason or another and are in various stages of recovery. We met an 11 year old girl who was going home today, who had had half of her head shaved and was recovering from her 5th brain surgery. All of these children are amazingly brave!
Post Surgery - Days 5 & 6
It also helps that Alyssa's spirit is very strong... and in spite of my nervousness every time she takes a step, gets in her wheelchair, slides off of the bed.... she performs all of these actions without flaw. In fact, if we hover, it makes her falter, so she is always strongly proclaiming, "Don't hold me, don't touch me, let me do it myself!"
It is hard but honoring these requests and understanding that she knows her physical self and its abilities better than anyone will be paramount in her speedy recovery.
A Big 'Thank You' to our visitors this weekend but especially to Olivia who spent hours this weekend with Alyssa as simply a friend hanging out on the weekend.
Another thank you to Jamie & Monica for healing our spirits with their incredible food.
And, though it's been said before, a thank you to you all for your prayers, remote healing, positive visualization, chanting and positive thoughts... it is working and you are all a blessing to our girl.
Post Surgery - Day Four
Her mental prowess hasn't been diminished in any way as evidenced by the fact that she is the reining champion of Candy Land. She has even brilliantly made up New Rules for the game where she 1) is required to shuffle the deck 2) strategically places the Frosty Princess card (the square closest to the end of the board) on the top of the now shuffled deck and 3) must be the first player to draw a card. Then, for cards that are chosen that typically send players backward to the beginning of the board, Alyssa's New Rules have determined that those cards only apply to adults and not to children, making her exempt. Now, if these new rules aren't brilliant, I don't know what is.
Alyssa also had PT (Physical Therapy) today.
The first session was in the morning, soon after the crack-of-dawn, cruel and sadistic doctor rounds where a team of doctors insist on violently waking you up during your REM sleep, gawk at you like a caged animal, barrage you with questions and then leave you in a sleep-deprived quivering mass. So, as can be imagined, Alyssa was quite grumpy during this PT session... that is until the bubbles came out and she had to pop them every which way.
The second PT was in the afternoon and went much better than the first but the third session was probably the best. It wasn't an offical hospital-sanctioned PT but rather one brilliantly derived by Gordon. The objective for Alyssa was to punch at the wonderful get-well-soon balloons (thanks to everyone who has sent them) with both hands, but especially the weaker right hand. This PT Program is called Punch The Surgeon.
Post Surgery - Day Three
She did begin physical therapy today and did well. She was able to hold her stuffed animals betweeen her two bended knees and not only cross her arms but also hold them above her head.
She also ate six 'Uncrustable' peanut butter and jelly sandwichs, which I believe is a record for anyone that I have known, young or old.
Apparently a team of 30 doctors met today to discuss her "case" and they are "baffled" by the turn of events. Well, such is the wonder of Alyssa to always keep us guessing!
We are not sure of a discharge date but, as always, we are continuously touched and blessed by the outpouring of love and positive energy that is healing our girl. Thank you.
Post Surgery - Day Two
Her right eye also swelled up today, leaving her almost completely unable to see but, as of the writing of this post (about 8:30 PM) the swelling on that eye is receding so that she can now watch Sponge Bob Square Pants over and over and over. The swelling should begin to recede in the left eye as well so that she can begin to regain her sight.
She also ate some food today. Leave it to Alyssa to not compromise her taste buds even under the worst circumstances. She ordered the hospital mac and cheese and when she tasted it, couldn't bring herself to eat it -- it just wasn't cheesy enough. A BIG 'Thank You' to Auntie Linda for bringing over both the cheesiest mac and cheese, which Alyssa gobbled up, and the Godiva chocolate which, while it was was being eaten, Alyssa exclaimed how delicious it was. Both were big successes in improving her mood.
Of course, the big question now is regarding the function on her right side. She did sit up today so she is gaining control of her trunk. Also, she does and can move her right leg. With effort she can also move her right arm. The doctor's are saying that she will need physical and occupational therapy (timeframe TBD) in order for her right limbs to regain their function but are optimistic by the signs of movement so far.
Post Surgery - Day One
Alyssa's fine motor function on the right side of her body isn't back yet and it is causing her much frustration. As part of the to-be-expected recovery process, her brain is swelling and the eye on the left side of her face is completely swollen shut. The swelling should begin to recede in the next couple of days. She is currently still in the Surgical ICU where she will likely spend another night.
They doctors did want her to have another MRI this morning but despite much sedation, Alyssa was NOT having it! She is very strong willed...
Your prayers, good thoughts, holding in the light, chanting, mantras etc. are working (keep them coming) and my girl will walk out of the hospital this weekend.
6/3 @ 6:50 PM: Although not yet controlled, Alyssa got her brain to move both her arm and her leg, both great signs... she will try for another MRI tomorrow
Surgery Day
Alyssa is now in surgery. The expectation of the doctors is that the surgery process, prep, craniotomy, brain scan and post procedure bandaging will take until 3 PM today.
There is a team of two anesthesiologists, a surgery nurse, the primary surgeon (Dr. Madsen) and some interns that are in the operating room.
They are hoping that Alyssa will not need any blood transfusions but thank you to everyone who was able to donate blood. Now we just wait, with updates every 1-1/2 hours by the nurse liason so as we get more information, we'll post it to the blog.
6/2/08 @ 9:30 AM - The anesthesia has been administered and all IV's have been inserted. There is an arterial IV that will monitor her blood pressure and heart rate throughout the surgery. She will also have a bladder catheter and a breathing tube. They are about to make the incision.
6/2/08 @ 11:00 AM - The doctors think they are about half way through the resection (tumor removal) and Alyssa is doing well.
6/2/08 @ 12:30 PM - The doctors have removed all of what they think is the tumor from Alyssa's brain. They are now going to scan her while she is still opened up to ensure that they have indeed removed everything.
6/2/08 @ 1:35 PM - Just spoke with the surgeon... he said that the tumor extends further than they anticipated but because what they've removed so far seems to be pathologically benign, they do not want to risk going any further. They'll be closing her up next.
Blood Donation
Also, according to the paperwork we received, any blood donation must occur at least 3 business days prior to the surgery so that the blood can be processed. So, the deadline for donation is 5/27/2008. Finally, if you are going to donate, please call me ahead of time (508-367-2714) so that I can give the hospital the approval to accept your blood. They can only accept blood as a directed donation that has been given pre-approval. Otherwise, the donation is simply an 'honorary donation' and goes into the blood bank in general but it is not specifically for Alyssa. For more information about setting up an appointment for a Directed Donation, you can call: 617-355-6677 or go to the following link:
http://www.childrenshospital.org/about/Site1394/mainpageS1394P6sublevel37.html
Any unused blood donations will simply go into their blood bank and will likely go to some other needy child.
Thank you!
Surgery Date
Thankfully, they have acquired the operating room that has the MRI scanner included in it. This means that, while she is still opened up, they can scan her brain and see if they got the entire mass out. If not, they will have the opportunity to keep going as needed. This piece of equipment precludes having to have multiple surgeries.
So, as of this writing, the surgery is just two weeks away.
With this earlier date, we're hoping that she will be healed enough to enjoy her summer.
Confirmed Diagnosis
The bottom line is that it has to be removed. Right now, we have a tentative date of July 17, 2008 for the surgery. We've been told that the surgery takes about 4 hours (5 hours if they do a brain scan while she is still opened up to confirm that all the 'hot spots' have been removed) and then 2-3 weeks initial recovery after which she can go swimming.
Thankfully, they don't fully cut off the hair... only a portion where the incision is made. Then it takes 3 months for full recovery to contact sports like soccer and karate.
Long Term Monitoring
In addition to monitoring her brain function during normal daily activities, the doctors also wanted to determine what was going on with her brain function during a seizure. To do that, they took Alyssa off of her seizure suppression medication. Then, in typically Alyssa-style... she didn't have any seizures that we knew of..
Later, we found out that she did have one late on Friday, the night before we were leaving and, indeed, the source of the seizure activity was in the left temporal lobe where the brain mass is located.
Initial Diagnosis
To give you some background, we began noticing Alyssa's seizure activity in October 2007. Actually, she had been complaining for months before that her nose "felt funny" but we didn't really think anything of it. Then, one weekend, after three successive days of witnessing her seizures first hand, we knew something was wierd. We didn't know that they were seizures at the time but what was happening was that her face would contort and, as she lost control of her facial muscles, she would begin drooling. These episodes would last about 10 seconds with about another 10 seconds needed to recover her speech.
Because Alyssa always said that her nose felt funny, we took her to see an ENT as we assumed that the probem was with her tonsils or adenoids. In fact, since birth, her snoring and snorting could rock the rafters!
When we got her to the ENT and described what was happening, the doctor scoped her through her nostrils and, while her tonsils and adenoids were on the large side, he said that they weren't large enough to warrant her episodes. Rather, he said that what we decribed sounded like were 'absence seizures' and that we should investigate that possibility.
So, in November 2007, Alyssa had a baseline MRI done during which was found a mass in the left temporal lobe of her brain. She also had an EEG which (after a night of sleep deprivation -- for both of us, actually) turned up normal.
Since the doctors weren't sure if the mass on her brain was causing the seizures or if the seizures were creating the mass on her brain, she was put on seizure suppression medication with the intention of checking on whether the mass was there after a couple of months.
Fast forward a few months and two MRIs later and the doctors have confirmed that there is a definitive mass on her brain. The next step is to confirm that this mass is the source of the seizure activity.
