Maya is getting too darned smart and funny, so quickly!

It seems like right in front of our very eyes, every day, Maya is becoming more and more of a little individual who is articulate, independent and funny. This past Sunday Brianna decided she was too mature to go see a live "Blue's Clues" show with Grandma Dayle, Auntie Nicole and her cousin Savannah. Maya was more than content to take her place! According to Grandma, she was enthralled by the show. This means her attention span is now long enough that she can go without a screaming fit to leave for at least an hour and a half - woo hoo!

The day prior, Brianna spent the afternoon with her friend Ali. As it was a gorgeously warm day, Victoria and I decided to try a motorcycle ride with Maya. Maya was wary at first about putting on the confining harness and helmet to allow her to be safely attached to me, but it turns out she was just cranky tired. After we got underway Maya promptly fell asleep and I led Victoria to the Dewey-Granby Oak I recently was amazed to see on a shortcut that my TomTom led me through in Granby. We parked the bikes, awakened Maya and she spent a good half hour playing on the tree and checking out the property there. We then rode to a nearby roadside food stand, had some sodas and snacks and then rode Rt. 20 around the Barkhamsted Reservoir to the part of the Compensating Reservoir nearest our house, where Maya got "nakie" and waded in the chilly water before we headed around the corner for home.
The photos and short videos of our Dewey-Granby Oak tree visit are on our Flickr page here.

Maya's language skills blossoming!

First of all, we officially announce that there will be no party for Maya/Brianna family/friends (the one that was previously just postponed due to chicken pox). We have decided that there is just too much going on. Sorry for the confusion, but Brianna already had three parties and Maya had a small one and she's good with that.

Now that that news is announced, let me tell you Maya is talking much more now. Still not near peers, but making progress. In the above video she uses her improved pronunciation to play a game in which she makes you close your eyes, then she goes and brings her wipes box and says, "Open Eyes!" You then must act very surprised. Great fun the first dozen times in a row...

Brianna is now a full Green belt in Tae Kwon Do. Her friend Grace has started taking classes as well and Brianna is so excited to have one of her friends in class again. Her friend Isa used to be in her class but "graduated" to a more advanced class a while back.

Brianna is also doing excellent in Kindergarten. She is reading at between levels 3 and 4 and writing sentences phonetically in a journal.

Below are some recent pictures of the kids:

Below is a picture of my Great-Aunt Edna taken by my mother recently with one of her great grandchildren. I love the spry energy she is giving in this picture. Definitely one of my new favorite photos.

Tiny Family B-day for Maya - Uncle Ryan now has the Chicken Pox!

We had a nice little party with Grandpa Jack and Grandma Dayle at our house for Maya's actual birthday last night. The main family/friends B-day is still on hold pending complete freedom from the Chicken Pox virus at our house.

Despite the unlikeliness of anybody getting Chicken Pox nowadays with the immunizations that kids have been getting since 1996, it seems that Victoria's brother, Ryan, who has been living with us, has developed a mild case of Chicken Pox as well, thus confirming that Maya did indeed have it. Researching the incubation period, it seems to be around two weeks. This interestingly puts the start of Maya's symptoms about two weeks after our return from Walt Disney World. Isn't airplane travel fun? A new surprise every time!

Ryan did have the pox as a young 'un, and thus his current case is mild with just some minor itching. We are waiting for his case to "crust over" or turn dark enough red and with no indication of new marks or itchiness before rescheduling the family/friends party for Brianna and Maya. What an extended birthday season this is turning out to be!

Plenty of photos posted up at http://flickr.com/photos/gorskipics

Birthday party cancelled due to...Chicken Pox???

This past week we've been seeing little bumps on Maya that looked like various sorts of bug bites. We were unsure of their origin (Victoria and Brianna insisted on labeling them "spider bites" although there are no visible spiders in our house, no one else had bites, and spiders biting humans is for the most part a defense mechanism, not a way to feed. Well after Brianna's Little Princess party on Saturday, we found more bumps and one that was round and looked like a pustule that you would see with poison ivy. With winter in our area and all, poison ivy was kinda unlikely, so we looked on the 'net for possible reasons and narrowed it down to a mild case of Chicken Pox (last week a low-grade fever, current runny nose, no other symptoms).

"But wait," you say, "Don't they immunize kids for Chicken Pox nowadays?" Sure they do. But a small percentage of those who get immunized can still get Chicken Pox, and most of those are a mild case. Always read the fine print!

So Victoria spent a good part of the night calling people to cancel the family and friends Brianna/Maya party planned for Sunday, and then calling the people who came to Saturday's party to warn them of their Chicken Pox exposure. Sorry world! I have no idea where she got it from, but if anyone is likely to get a rare medical condition, it is Maya. She is as happy as can be anyway, and seems to be unbothered by the pox.

Right now I am blogging from a surgical center as Victoria has a minor procedure performed. I've got my healing thoughts going for a minor non-event...

-Chris

Our girls are growing up fast...

It is now January 13 and I am writing as I lie here next to Brianna as she sleeps sick with some bug. She threw up at least seven times since waking up this morning and this is the first day she has missed school so far. For all that she seems to be taking it rather well. She is getting so mature! She can read basic books now with very little assistance. She is into Hannah Montana, which is purely via peer influence as she has never seen Miley Cyrus in any program or movie. She also is developing nurturing skills since getting kittens for Yule/Christmas.

The kittens were rescues from New York City in the municipal pound where they kill fairly quickly. The rescue organization in Stamford had the little brothers neutered and up to date on all immunizations. They were twelve week old tuxedo coat mixed breeds with upper respiratory infections and ringworm fungus patches when we got them. The organization was great in supplying us with medicine for free however, and they are in almost tip-top shape now. Brianna named "hers" Boston, short for the Red Sox, and Maya named hers "Baby." Baby is slightly more outgoing than Boston at the moment, and Brianna enjoys cradling him and toting him around like a child. He loves the attention and she loves the fact that he allows her to lug him around. They both have Siamese in them and purr, talk and play a lot. They are also natural fetch and retrieve cats, playing fetch with no training and bringing toys right back to the thrower.

On to our other little love muffin, Maya. She is healthy at the moment with the exception of some out of range labs that we are investigating. Her stomach "G-tube" was accidentally yanked out by me one night in late December when I grabbed her by the front of her pajamas in her crib to pull her up to change her. I felt and pop and she cried for about 20 seconds. Of course I rushed her into our bedroom, opened the pajamas and found the mushroom end of the tube now outside of her body. Victoria called the GI doc on duty and he said not to worry, it might leak a bit for a few days but should close right up. It did not leak and did close right up and we were able to avoid the cost and trauma of sedating her again to have it removed by her GI doc, which was scheduled for January 16. She was so relieved to have it out and still proudly lifts up her shirt, points to the tube wound and says, "Gone - Happy!"

She has had a few bouts with sinus infections since the last post but is clear right now. She also has had several episodes of nosebleeds, similar to a pattern that Brianna had and still occasionally does. My solution is to give her some Nasonex nightly during the dry air months and keep a humidifier on in their room - works 100%.

In other news I have been unemployed since December 19 and we have gone into tight budget mode. The kids are down to two days a week at daycare, the minimum to keep a slot open there. I take care of them the rest of the week all day except for Brianna in the afternoons with Kindergarten. I hope this is very temporary as they deserve the peer interaction and the professional structure and projects at the daycare facility, but work in my computer field is hard to come by and devalued to 1/3 the wages I could get a few years back. At least I am not alone as many others are in far worse shape in this new "near-Great Depression."

We also have Victoria's brother Ryan staying with us in Maya's former room. The girls now share Brianna's room and they enjoy Uncle Ryan's attention. Ryan will be attending courses at Northwest Community College this semester and is doing that unenviable twenty-something process of figuring out what to do with his life. Unfortunately for him and his generation, the opportunities are poor right now. Hopefully by the time he lands a degree the prospects will be much brighter!

Brianna, Maya, Victoria and I along with Nicole, Eiko, Savannah and Jake are being taken to Disneyworld at the end of the month for 4 days by Grandpa Jack! Brianna is so excited! We looked up which rides she can ride at the Magic Kingdom and Epcot and she is tall enough for all of them - the requirement is 40" and she is 46" - woo hoo! She even can ride Space Mountain and she is mega excited to try roller coasters! We hope for good weather and no illness in anyone for the duration of the trip.

The next post should either be about Disney or about the results of Maya's latest rounds of tests to figure out her abnormal lab findings.

Here's to hope and peace starting January 20!

-Chris

Maya's second and Brianna's sixth Christmas coming fast!

The picture above is about two months old now - it was taken by the photographer who works with the day care center. Maya's face is still fairly rash red from the NG tube and tape that had been removed a month or so earlier.

So here it is almost Christmas. Brianna is getting so mature - Hanna Montana has captured her attention and is the latest fad for her. Maya seems to gravitate to Arial from "The Little Mermaid" as her own personal idol.

Maya has been fairly healthy, but we have discovered that her blood work indicates she is hypothyroid which she will have further work to determine if it is consistent and perhaps what the cause is. She also just developed a triple case of conjunctivitis, sinus infection and ear infection which the doc gave her amoxicillan for. That's the weak stuff but maybe it will work this time, we hope.

We are also trying to remove the "binky" steadily from Maya, and boy is she going through some miserable withdrawals. She chews on cup lids, straws, even her fingers and can cry pathetically for long periods without her binky. We let her have it to sleep and now when she's so uncomfortable from being sick.

So our house is being affected like the rest of America - I have lost my contract job and will soon be on unemployment. Looking for work is an exercise in masochism - all of my skills are valued at 1/3 what I am accustomed to making at them. I need to rework myself into something useful that doesn't require expensive schooling. Any ideas? Perhaps welding so that I can build bridges when the "Infrastructure" funds come through under Obama? I applied for the Census Bureau (coming up in 2010 - some jobs available now), aced the test so that I am qualified for the Supervisory level, but learned that pay tops out at $20/hr. I just finished making $32 for way less responsibility. That sucks. Jobs for PC techs without many levels of certifications and programming skills are at $10-16 per hour. Bad, bad. I really hope my case goes well with the State and I get my job back. That would be a very bright spot in a very bleak near-mid future.

Also many friends and family members have lost jobs, and the list grows daily. A good friend now has worked 2-3 jobs at a time for months, 75+ hours per week, and is still going to file for bankruptcy and her family is going through hell. A co-worker (former now) is about to file for bankruptcy. A good friend's new girlfriend has filed and has left CT to move in with him across the country to try to start fresh. It is hard to feel optimistic in these circumstances, but we must try and remember to have gratitude for what we DO still have and compassion for those who have less. Charity is more important now than ever, and we need to get used to a reworking of capitalism and what the American dream means after the investment economy has failed us.

Enough with my political diatribe. Take care this holiday season, treasure your friends and family and learn to appreciate the little things. And drop guilt - if you can't afford gifts, flat out declare it to the world (we have) and take control of your finances - giving to real charity when feasible. Please pray, meditate upon, project positive vibes toward, focus your will upon (whatever works) peace and happiness and a renewed hope and vision for humanity.

With love and best wishes for those who still have secure jobs, and better wishes for those that don't that something better will appear for you,

-Chris

The Cute Little Tyrant

Maya has been growing into a toddler more every day. She now has about a 30-50 word vocabulary and loves to say "Hi" and "Bye-Bye" to people. She can go from being extremely affectionate and caring to a little comedian to a sneaky little bully in a short period. She has been affectionately written up at day care as perhaps training to be a boxer. The worst target of her random hits is her sister. I think Maya gets a kick out of Brianna complaining to us that "Maya hit me again" or "Maya hit me in the face." Maya then is subject to a time out in a corner, which she goes and takes willingly. We started out counting to twenty, but now we count to fifty and she canot have her binky during the time out. She then is required to "say sorry" to the person hit and give a hug to that person. She also does this willingly and affectionately. It is very cute how she "says sorry." It is not verbal, but she made up her own sign, which is a sort of shrug to her right shoulder, with equal up movement on the shoulder and down movement from the head. I have it on video and will get it up here eventually.

Medically she has been stable, with the exception of her stomach peg tube. The site needs 2x daily treatment with a corticosteroid cream to prevent the development of a granulomatous wound. Even with the cream the site still looks red and pusses a bit. She can speak and drink well now, but she still has the tube in because we have been told that it would be dangerous to remove it before mid-January, as there is risk of stomach injury if the stomach has not fully adhered to the abdominal wall yet. So we still watch the tube closely and it still is an interference with her freedom of movement and ability to lie on her stomach and develop that skill (prone activity).

So that's that with Maya. Brianna is doing very well in Kindergarten. We got her first report card and had our first parent/teacher conference and she is performing at or above expectation in all areas. She is noted as being kind to other students. We like.

Victoria is as I type undergoing laparoscopic exploratory surgery to look for endometriosis or other possible explainations for recurrent pains in her abdomen that doctors have not been able to determine the source of by MRI (or CT Scan, I'm not sure which she had), ultrasound or x-ray. It would be nice to find out and if possible resolve her discomfort today. Hopefully we'll have some indication of a cause...

OK, the doctor just called me. They did find some minor areas of endometriosis which he removed. They also discover dialated veins (like vericose) around her uterus, which are apparently somewhat common and can cause generalized abdominal or pelvic pain after prolonged standing or at the end of the day, but are no big deal. Lying down relieves the dialation so in the AM people with that condition usually are discomfort free. He has some ideas for treatment for those which we get to discuss when Victoria wakes up and is able to converse - about an hour or so from now. So all in all perhaps some pain relief will occur for her now - yah!

Happy Thanksgiving everyone!
-Chris

Excellent News Confirmed!

Maya just had a swallow study done and she can swallow just fine! We just need to await clearance from her GI doctor for an all-out drinking fest!

We assume that after that the PEG stomach tube can be removed ASAP.

Maya joined cousin Maverick to see the Wiggles today!

Maya got a special treat today thanks to Aunt Michelle. Michelle (Victoria's cousin) had purchased four tickets for the Sunday, November 2 Wiggles show in Albany at the Times-Union Center. Her older son Phoenix, who is six years old, decided that the Wiggles were too immature for him, so he said he did not want to go, but his younger brother Maverick was still gung-ho. Michelle then invited Victoria and one of our kids to go in Phoenix and Dana's (Michele's husband) place. Victoria was not feeling up to it in the morning, and Brianna was sharing the same sentiment as Phoenix, so I went with Maya. Maya loved the excitement of seeing such big buildings in Albany. For a moment it reminded her of one of the other cities she's been to for medical procedures and she said, "Noooo" when I went to take her out of the van. I reassured her this was no doctor visit, and when she saw that her cousin Maverick was there too, she calmed quite a bit. Maverick is just a bit older than Maya and he is almost fanatical about the Wiggles. Maya had no real experience with the Wiggles, and I doubt she's ever seen them on TV, but she enjoyed her first show experience very much and did a bit of dancing and also moving up to the short wall separating the floor seats from the upper levels and getting into the "mosh pit" of kids dancing up there.



So after meeting Michelle and Maverick at the Colonie Center Mall near Albany and eating at Friendly's there, we piled into Michelle's van and made our way to the Times-Union Center and very cheap ($5) parking only 2 blocks away.

From the parking lot we got a great view of "The Egg," a performance center made famous in They Might Be Giants' "The Egg" from their album "Venue Songs."



We were there a bit before the show and found our seats were only 3 rows up and to the right of the stage. The view was still very good. They put Wiggles stickers on each seat for everyone, nice touch. I went to the concessions and bought 2 fruit cups for the kids. Of course when I presented them I said, "Fruit salad, yummy yummy" (insider Wiggles humor).

The first thing I noticed when the Wiggles entered in their "Big Red Car" was that Greg, the "Yellow Wiggle" had been replaced. Apparently he has quit the Wiggles due to a medical condition.



Another thing I learned is that the Wiggles, for all of their worldliness, seem to have as much geography knowledge about the USA that most USA kids have about Australia. Anthony, the blue Wiggle, as part of his banter with the other Wiggles, said that he just learned that Albany is the capital of New York.

The show was fun for Maya and Maverick. Maya especially loved the song "Twinkle, Twinkle Little Star," as she sings and does the motions for that at preschool. Maya, towards the end, was getting very tired and needed a nap, so was a bit grouchy. Maverick was just plain silly, doing slides on the floor as well as dancing.

It was a good time. Thanks to the Heleba family http://www.helebafamily.blogspot.com/ for the invitation and the tickets!

Halloween 2008

Grandma Dayle, Aunt Nicole, Uncle Eiko, Savannah and Jake came to New Hartford to go trick-or-treating with Brianna and Maya. Brianna was a bride with Maya as her flower girl (very creative Mommy), and Savannah was a fairy and Jake was a monkey. After visiting two of our neighbors we rendezvoused with the rest at the New Hartford Firehouse, where they have open festivities for the kids each year.

After that we trick-or-treated up Cottage Street. The kids were very polite and Maya was even trying to say "thank you" to people.

More pictures and video can be seen at http://flickr.com/photos/gorskipics/sets/72157608627987433/

Some excellent news!

Maya just returned from a visit in which her vocal chords were visually checked by a scope. The specialist at CCMC declared them to be back to normal! Anyone who has heard her screeches, screams or developmental babbling in the past few weeks could have told you that was likely to be the case. As for whether or not she can return to swallowing liquids, that apparently is something that cannot be determined conclusively by a scope. There is an element of "learning" there that she may or may not still know. She will need to go for a swallow study as soon as they can fit her in for one to determine if her body can properly swallow liquids without choking or silently "aspirating" them, i.e. allowing them into the lungs. Once she is given the A-OK for liquids, the PEG tube will be sceduled for removal, another operation in which she is sedated.

Regarding her other parts, her lungs, sinuses and ears have all been free of infection in the past 3 weeks or so as well. Yes, it is true, I have had her on an even stronger version of the garlic/ginger tea during this period due to her having pneumonia in the lead-up time to her PEG tub placement/bronchoscopy at the beginning of the month.

The results of the bronchoscopy/endoscopy (needed to place the stomach port properly) have been generally good, which is a mixed relief for us as we are still exploring why she has too many lung/sinus infections. Bost procedures showed no evidence of GERD (acid reflux), which many doctors have looked to blame and has never been proven. The endoscopy showed nothing out of the norm in the esophagus or stomach, and the bronchoscopy showed slight (minimal to mild) floppiness of some of the larger bronchial passages, but not enoungh to be of any signifigance. Also, Maya is now free of atalectisis which she had present since her PAPVR repair heart surgery in Boston on July 31. Her lungs looked very good and the sputum in there was very thin. Samples of it cultured came back free of bacteria, but with the presence of some 'macroscopic' (visible to the naked eye) particles of unknown signifigance. We are still piecing together some information that may lead to an answer that these particles may be a piece of, stay tuned.

On the negative side, Maya's PEG site has been infected since it was placed, leading to pain for her and worry for us. The wound was just categorized as "granulation tissue" and we are now treating it with steroid cream, as antibiotics do nothing for granulomas, as they are part of your own body overreacting and attacking some of its own cells. Don't look if squimish...

She has also been physically more active. At times she is a riot, at other times a little bully. She pushes Brianna a lot, sometimes just to see her reation, other times because Brianna is intruding on her personal space or competing for attention (like fighting over sitting on my lap). And Brianna then loves to complain about it to us. Sibling rivalry, what a joy. On the good side, there are times when they play excellently togather and are silly and make each other laugh like crazy. That is awesome to hear after all that Maya has been through.

Well our heartfelt thanks and love go out to everyone who has been praying, meditating, directing healing energy, thinking positive thoughts, etc. for Maya. They definately have had strong effects. Don't stop just yet, as there are a few other issues that we have not divulged yet on this blog because we do not have anything other than a pattern of information without a confirmed diagnosis, but she still has some health issue or issue(s) left to resolve.

And to Abby - you are our inspiration. We all love you and pray for the best for you. Your suffering is unfair and your strength and maturity with what is happening in your body is amazing. There are no answers why that can make any sense now, but we pray for your suffering be less and your enjoyment of life to be more. You are so strong and smart and Brianna talks about you all of the time. Our hearts go out to you and your family and just know that there are many of us that would take your place if we could.

More later...
-Chris

A lot has been happening

My apologies for the length of time since the last post. So much has been happening, mostly with Maya medically, that there has not been much time or energy left to blog.

Maya has been having several problems with her NG tube. Her skin is so sensitive to all of the adhesives used, as well as the NG tube material itself, that she gets an oozing red sore under the tape w/in a few days. Changing the tube to the other nostril weekly to alleviate the rash on one side temporarily solved the problem, but has stopped being effective as the interval now required to change the tube is to short to allow enough healing of the other side's rash. Also the procedure to remove/replace the tube is traumatizing to Maya. In addition, she has been developing aspiration (at least in part) based pneumonia due to aspiration of either foods, stomach acid or saliva, despite treatment with acid-blocking medication. The NG tube is a foreign body that does not allow for full closure of the spinchter at the entrance of the esophagus into the stomach, so it allows a path for acid to reflux back up the throat, possibly then over and down into the lungs.

To reduce the NG tube problems, we are having a P.E.G. tube/port placed into her stomach on Friday which will allow food/liquids access as well as samples of stomach acids via a port in her side. She will still be able to eat solids, but liquids will be through this port, just like the NG tube. At the same time she will have a bronchoscopy to examine her lungs and trachea to look for structural abnormalities and to test her mucous to see if they can find a cause for her continued infections.

In addition we have noticed, as well as her pediatricians, that she has significant bowing of the tibia, more pronounced near her ankles and this is happening at the same time her growth has slowed or stopped (since spring). Tests for Vitamin D deficiency have paradoxically led to a finding of an extremely high 1,25 Dihydroxy Vitamin D (Active form of Vitamin D), which can be caused by, in order of liklihood: Sarcoidosis, Tuberculosis, Hyperparatyroidism, hereditary syndromes and various inflammatory diseases. So far we have a negative skin test for TB, but that is common in children - a follow series of three day's of stomach acid samples will be upcoming via her port. She also has negative tests for hyperparathyroidism. Sarcoidosis tests will be performed soon, as well as genetic testing.

I have to run now, time to take Brianna to Taekwondo. Her are a few pictures of Maya's NG tube and rash:

-Chris

Good news and bad news today with Lung/Sinus CT Scans

Today Victoria and I woke up at 3:30 AM and hit the road by 4 AM with a sleepy Maya to have two CT studies performed under general anesthesia. One was an examination of her sinus passageways to look for blockages or other reasons why she is so prone to sinus infections. The other, the chest CT study was to look for something Victoria and I were dreading and haven't talked to many people about...blebs. Our concern was that they would be large, widespread and possibly cancerous requiring major surgery, etc. to try to correct.

We had Maya under sedation right on time at 7:30 AM, and her studies were over in about 45 minutes. We then were able to walk over to the Ear, Nose and Throat clinic and consult with her assigned Dr. on short notice to interpret her sinus study. Maya was found to have normal sinuses with some "mucousal swelling" in her front sinus passageways, which was to be expected with a current sinus infection and/or with an NG tube adding to irritation. So basically it was good news that nothing was awry with her sinuses, but it was disappointing not to have a physiological and simple reason for her recurrent infections.

So then we had a long window of time until our 4:30 PM appointment with our assigned pulmonary doctor, which we filled by taking Maya to a TGI Friday's about 8 blocks away. Maya had not eaten since the night before, and was so hungry she ate a 1/2 rack of ribs and all of her fries. She then played a bit in the public square out front watching the large flock of pigeons and occassionally walking towards one. When a pigeon would take flight it would startle her, the first time she even fell on her butt as a result. It was very funny and I have video I will eventually post of it, but no time now.

When the time came to consult with the pulmonologist, Victoria and I had butterflies in our stomaches expecting ominous news. What actually happened is that the doctor and a visiting pulmonary doctor from Barcelona, Spain took some time to go over Maya's full history. While this was happening we both felt the doctor was unprepared and had not reviewed the CT scan, which was true, but the doctor redeemed himself by getting up to speed while briefing the visiting doctor as he pulled up the CT images. His initial opinion was that no blebs were visible, which the Spanish doctor agreed with, so he refocused the consultation on what he felt was relevant - a current pneumonia-like state in which Maya has areas of mucous caused by aspirated fluids, and a resultant or leftover state of collapsed lung tissue from her surgery. He also noted what was most likely a hiatal hernia that he was surprised was not discovered in earlier swallow studies. In either case, he said she needs chest "percussion" to be delivered by a qualified pulmonary doctor and we agreed to have him contact our pulmonologist in Hartford. Apparently we can be trained to do this ourselves. He also said the cause of her current infection was aspiration of fluids (saliva, water, etc.) and that Gastro-Esophageal Reflux Disease (GERD or acid reflux) was the largest contributor to this issue. He said the NG tube exacerbates the GERD, as does the hitherto undetected hiatal hernia, and he reviewed our doseage of Rantinidine (Zantac) and found it to be appropriate, but increasable if need be. He said the #1 priority needs to be controlling stomach acids and any fluids from entering the lungs, and the NG tube makes that nearly impossible. He introduced the idea of a G-port tube directly into her stomach, which I was not ready to entertain yet as it felt to invasive, but after consulting nurse friends sounds like a better idea to allow her esophagus, vocal chords and lungs to heal. Of couse that may mean no intake of any food or liquid via eating, simply all food pumped into her stomach, which is another major step downhill for us, which we hope will be reversable once her vocal chords heal, but with no guarantee. This also will likely further delay her ability to return to school, which was tentatively set for next week. That suck bad, as she needs social interaction badly.

On the bright side, we have qualified for Birth-3 programs and will be getting speech and possibly occupational/physical therapy to help Maya to get to age appropriate milestones in areas that she is suffering in.

So we have to wait a week before we have Boston Pulmonology's full report and can breathe easy regarding the bleb issue, which we will then have reviewed by CHOP in Philadelphia. In the meantime we get to look forward to consulting with and coordinating between: ENT Doctors in Boston and one in Hartford, Pulmonologists in Boston, Hartford and Philadelphia, Gastroenterologists in Boston and Hartford, Speech and physical therapists at home, a visiting nurse and our primary care physicians, ensuring they all recieve the proper and timely reports from each other while we work to find someone to take the role of an impartial case manager to coordinate and facilitate grop information exchange and consensus.

So that's where we are - tomorrow (or ASAP thereafter) we need to visit CCMC in Hartford to get Maya "modified (seated) percussion treatment" to loosen mucous and to learn to deliver it ourselves, as well as discussing the G-tube option benefits given here comprimised pulmonary state. And of couse figuring out day care for Maya that will accomidate her medical needs.

I am learning to adjust quickly and just be greatful that Maya is happy and affectionate and funny. We love both our kids and they are great gifts here to teach us so much about responsibility, altruism, sacrifice, gratitude and humility. I hope that all of Maya's conditions are temporary and will heal in the next year, but if they don't, we'll research long and hard into the best options to get her the best quaity of life given her medical limitations.

Thanks to all of you that have sent encouraging comments!

-Chris

Brianna's First week in Kindergarten

Brianna started Kindergarten at New Hartford Elementary School on Wednesday. There was a picnic at Giant Steps (her daycare) before the afternoon Kindergarten students left on the bus. Mommy, Daddy, Grandma Mimi and Maya all got to eat lunch with Brianna and her friends before they left. They did a great job getting on the bus, and Mrs. Scully, Brianna's teacher, told me she had a great first day.

Brianna said she loved her first day in Kindergarten. She knows how to bring things home by having a folder with one pocket that says "Home" and one packet that says "School" for things that need to be sent home from school for mommy or daddy to look at.

Brianna said she loved her second day even more than the first. She had music class that day with Mrs. Flower. In music class they did singing. On Friday they has a substitute teacher who was nice, and they saw the classroom caterpillars turn into chrysalises. She said when they left the classroom one was hanging like a "J," and when they came back it was in a chrysalis. They also had art class that day with Mrs. Rood. The project was drawing a picture of herself with crayons.

Brianna also likes the milk she gets every day at snack time. She used to dislike nap time at Giant Steps, but now that she has no nap time, she is very tired after coming home and has gone to bed earlier. Kindergarten is hard work from playing so much!

Brianna wants to say that she has three new friends in Kindergarten - Sadie, Marissa and Jordan.

Brianna's Open House for Kindergarten

Brianna was so excited to meet her teacher and principal on her open house for Kindergarten. She is in Mrs. Scully's class at New Hartford Elementary School. She had no trouble fitting in and even listening through a whole story. There are photos and short videos here: http://flickr.com/photos/gorskipics/sets/72157606972186387/

And here are the longer videos: http://video.google.com/videosearch?q=Kindergarten+%22Chris+Gorski%22&__q=Kindergarten&btnG=Google+Search&lr=lang_en&dur=&emb=on&so=0&num=10#

Sorry for the quick entry, but gotta run to first send-off at pre-school...

-Chris

NG (liquids tube) out, then back in...

On last Wednesday August 20, Maya went with Victoria back up to Boston for a follow-up barium swallowing study as well as an examination from the Ear, Nose and Throat doctor. The hope was to see significant progress with her vocal chord mobility and her ability to swallow without aspirating liquids into her lungs.

At first things seemed hopeful, as the GI team who removed her tape and saw the horrible red inflamed and flaking skin underneath wanted to provide an alternative way to get liquids to Maya. Then did a swallow study and determined that Maya could eat yogurt, applesauce and strawberries without aspiration of liquid into her lungs, but no blueberries, as these were seen to aspirate silently (no choking) into her lungs. How blueberries, which are near impossible to get anything thinner than a goo out of when squished, could possibly be worse than strawberries that squirt lots of juice with every bite, is beyond me. I wonder if the test were performed multiple times, with different foods administered in different orders, in the results would be the same.

Later that day, the ENT doctor scoped her vocal chords and concluded basically no change. Not a very hopeful sign. And also not fitting with the swallow study results which supposedly indicated some improvement. They don't want to see us again for another 4-6 weeks, so no quick improvement is occurring.

In any case, they kept the tube out and told us she should be able to get enough liquids by eating applesauce, yougurt and strawberries. It hasn't been working. She chokes often on the yogurt and applesauce and her previous heavy output of urine had nearly disappeared, and a strong hacking cough has developed, as well as a gain of 2 lbs from the 20th until yesterday. Not good - Victoria and I decided she should be back on the NG tube for proper hydration.

So today I took her to the Pediatrician's office, where the doctor heard her cough but said her chest sounds clear. Nevertheless, they sent me to get a chest x-ray done to rule out a pocket of fluid the stethoscope might not have picked up. At the same time she had no explanation for the deep cough and agreed that she should be back on an NG tube for fluid.

So then I tried to track down an alternate material for an NG tube beside her polyurethane ones that irritate her skin. I was told the only alternative is a difficult to locate "argyle" type, which the Hartford CCMC Gastroenterology office did not have, nor did they recommend due to its stiffness and discomfort factor. So I went to that office and had them reinsert a NG tube, which I did the brave daddy thing for and left the room while the nurses handled my feebly screaming daughter who also threw up during the procedure. Hellish, but the thought of her spending eight to twelve months thirsty and gaining weight like crazy was unacceptable.

Now that the tube is back in and I administered a bolus of liquid she has been happier and eating better. I just the tube is the lesser of two evils and we will experiment with different tapes to minimize her skin irritation.

To all who have been sending kind comments, we appreciate it, and keep them coming. Responses may be slow in coming however, as our household has far more going on than just the Maya medical drama, so free time to email is very low right now.

Healing and adapting at home

Maya is doing fairly well at home. Victoria's mother, Deb, is staying with us and has been a great help with cooking, clothes, cleaning and caring for Maya. She will be staying for a while, ideally until Maya is off of the NG tube liquids and ready to return to school. We have not noticed any improvement in vocal quality yet, but she has a cold which is complicating speech, most likely. In any case we will probably be requesting speech therapy from the town to get her back on the right track when her chords are working again, or even if they don't get back full functioning we will request speech therapy to help her with alternative means of communicating. Right now she does great with pointing and some signing. She also understands pretty complex requests and complies very well, so no problems with comprehension.

We all have colds in the house now, with the exception of Victoria. That is ironic because Victoria has low white blood cell production which is being investigated and she is usually the first to get sick. She has been taking some new vitamins to boost her iron levels and overall health, so maybe they are making the difference for her. I have made a great batch of cold-killer tea and have been chugging it several times a day, and have also been giving it to Maya once a day via her pump, and I think we are doing better now. Deb has said she would drink the tea, but I think she, like Brianna, is avoiding it due to fear of what it must taste like. Those two are worse off than Maya and I, so despite the small sample size, I think that scientifically we can say that the tea helps. Several people have asked me for the recipe, so here it is:

Cold-killer Tea

Essential basics

• Large pot that holds 2 gallons or so. If you want less or don't have one that big, then use less ingredients accordingly.
• Jar of local honey (can be omitted for dietary reasons or for kids under 1 year old).
• 2 bulbs of garlic and as many old flaky skins from other garlics that you can find.
• Flaky skins from all of your onions, plus the outermost juicy layer of one decent-sized onion
• 1/2 cup thinly sliced ginger root

Helpful ingredients for added potency:

• 1/2 cup dried nettles (aka stinging nettles) or fresh (1 cup shredded) if you know how to pick them.
• 1/4 cup dried dandelion plant, or fresh (1/2 cup shredded) if you can get some free of lawn chemicals.
• 1 tablespoon dried licorice (not for pregnant women or those with heart conditions)
  
• 3/4 cup dried raspberry leaves, or 4-5 fresh leaves, shredded

Helpful ingredients for taste that also have cold-killer properties:

• 3-7 dried cinnamon sticks
• 1/2 cup dried spearmint or 1 cup fresh mint leaves shredded.

Helpful ingredients for hard core cold-killer tea that taste VERY bitter - beware:

• 1/2 cup dried mugwort (avoid if pregnant)
  
• 1/4 cup dried marshmallow root

Feel free to experiment with adding herbs that you have found to be helpful, just consult an herb guide to be sure they are not dangerous for any conditions you might have or to make sure they are safe for children if you are going to use the tea for a child.

Put everything in the pot (honey can be added when the water is hot to taste) and fill with water to within 1/2" or rim. Use high heat until it starts to boil while stirring in all ingredients until they are waterlogged and sink (skins and garlic may not ever sink), then reduce heat to slow simmer for 2-3 hours. Strain tea with fine mesh strainer or cheesecloth and drink some, store the rest in a refrigerator. Should last 2-3 weeks cold in containers. Drink at least 2 big cups a day, more if you can handle it and want max benefits. Also try to eat 1-2 cloves of garlic a day by holding your nose, chewing it up well, and chasing with juice.

We're home!

After a long ride on I-90 (for some reason traffic in early afternoon was crawling all the way from Boston to the CT border) we arrived home at about 5 PM today. Maya was so excited! She loves the comforts and routines of home. She walked around the yard and inspected her trees (lots of japanese beetle damage on the cherry trees), inspected the refrigerator and tried to snag blueberries (juicy fruits are a no-no), then decided she wanted dinner and tried heaving herself into her booster seat. It is great to see her home and happy.

We are getting used to the regular hydration bag/pump intervals and procedures. They are a hassle but not unbearable. Maya has gone, however, from being a good sleeper to a poor one, and we have her in a "pack n' play" in our room to closely monitor her and hopefully prevent another yank of her NG tube. If so it is a four hour minimum ordeal to get another reinserted at CCMC in Hartford. We were provided some cuffs designed to prevent her wrists from bending and to restrict her thumbs (imagine larger diameter toilet paper tubes made out of cast-like material that closes with Velcro™), which are supposed to prevent her from yanking the tube out, but I discovered tonight that she is like Houdini and handed one back to me three minutes after I put it in on her.

This morning Victoria observed a five year old boy brought into Maya's room for a few hours before his mother's beeper went off and nurses came and rushed him out as if he was on fire. Turns out he was awaiting a heart transplant and one came in. It is inspiring and heartbreaking to imagine the story of the donor and his/her family. I hope the boy does great and the other child lives on in him.

Our experiences with Maya in critical care facilities for children have been life altering. She has for the most part been the healthiest of the sick kids, and speaking with other families and hearing their stories has been humbling. Gratitude and compassion have grown strong in us as a result, and the experiences have made us better people, I feel, as a result of having our priorities reset. I personally have learned to be less judgmental of people who may be expressing anger or insensitivity or just plain aloofness. That may just be their defense mechanism for processing life and death experiences.

So while I hope very few of you ever have to experience such places where life and death are balanced on the point of a pin, if you do, remember to count your blessings and give gratitude for what you still have or what you did have, and do something according to your means and what feels right to help lower the suffering of others.

-Chris

What is it now, Thursday?

Today was fairly miserable. When Maya woke up, she had ripped out her NG (naso-gastro) tube and was really getting worse with a snotty nose. I also was feeling post-nasal drip coming on and I suppose the same allergin was getting us both. We had requested from the beginning that Maya be given Zyrtec or an equivalent, but it never happened.

Victoria was with Maya when they inserted a new tube. She came out with tears in her eyes (Victoria) and said it was horrible. When we asked what to do if she continued to rip it out while at home, we were told to get a new one installed at the CCMC in Hartford. That means a 4-hr. minimum trip each time. Not a viable option. We then tried to look for VNA's that would visit New Hartford and work with kids - Victoria called around all day and got nothin'. This leaves us in a big bind for daycare as well, because Maya cannot attend while needing fluid delivery, not even with the tube inserted while in daycare, due to the danger of it being ripped out while playing. We were told to get her in normal routines as soon as possible, but that cannot happen by any stretch of the imagination. We go back up in a few weeks for a reevaluation on the vocal chords, and in 3 weeks for an evaluation of the lung blebs, provided she has no colds from now until then - tough to meet, as she has a dripping nose now!

So we are pretty down right now, and hope to be home tomorrow after a night in which Maya DOES NOT remove her NG tube. And then we start a new lifestyle with Maya at home and needing lots of care without her friends.

Sorry for the depressing entry,

-Chris

Wednesday afternoon update

Chris here - Brianna and Victoria have gone down to eat lunch.  Maya is napping after a busy morning playing with Brianna, and then having her first fluid administered via her new Nasogastric tube.  It is a tube down her throat and directly into her stomach.  They apparently installed it early this morning before Brianna and I arrived at 9 AM.  She does not appear to be in much discomfort from it.  It is amazing what she is tolerating now!  She had 240cc of water injected over a 1 hour period into her stomach, and I had to walk around with her until it finished, then she fell asleep. 

Victoria and I were instructed by a representative from the company that produces the feeding bags and pumps on what to do with the home model, and how often new supplies would be delivered.  I asked the coordinating RN whether we would receive home assistance from a nurse, and was assured we would.  I also asked about school, knowing that they would not be allowed to work with her feeding tube (which is actually just for liquid, food is fine for her to eat normally).  I was told that most likely a nurse could go to her school when it was liquid time and administer it.  This is turning into a larger life-changing event than we had anticipated.  I hope her school will allow her to return, as she needs the interaction and normalcy of her friends.

Speaking of normalcy, the place in which Brianna and I stayed last night was one in which many distant families live for months at a time while a child is being cared for at the Children's Hospital of Boston.  Brianna and I saw 2 children with one of the rarest diseases in the world, Progeria, aka Hutchinson-Gilford Progeria syndrome.  According to wikipedia, only 48 children in the world currently have this condition, and we saw two and talked briefly with a South American family whose daughter was there with it.  I had prepped Brianna beforehand and she was polite and said 'Hello' to the girl that was in the common area when we went there to get some water.  I don't know if she was shy, unable to speak clearly or did not know english, but she sort of looked down and away when Brianna spoke to her, and the family tried to prompt her to speak, but I didn't hear anything more than perhaps a whisper.  It was so incredibly heart-rending to see the way this child looked.  She could have been 2 years old or 12, but she was less than 2 feet in stature, sitting in a high chair and had a wrist that looked like the wrist of a 100-year old, very bony, curled and thin.  I think that is perhaps the saddest disease in the world, where kids get all of the symptoms of old age while still babies.  It was so emotional for me that I cried in front of Brianna in our room and had a hard time explaining why.  We are so fortunate in that our family has repairable, minor issues compared to many others we have been crossing paths with.  A recurring lesson in this life is to show compassion wherever possible and express gratitude as strongly and as often as possible.

-Chris