Max and his ultrasound

Max had an ultrasound done a few weeks ago. He had an ultrasound of the kidneys and also of the bladder. The reason he had it done is twofold.
One, being that he was born with microtia and children born with microtia have a higher incidence of having kidney malformations on the affected side, sometimes causing problems.
Second, being that he was born in China and having been raised on formula in China, he is at risk for melamine sickening/poisoning. The American Pediatric Association recommends that children adopted from China, some going back as far as 2005, should be tested for melamine poisoning as there have been children adopted in 2005 that have been recently diagnosed with Kidney/bladder stones or worse.

So like any good mother, I took this info to my pediatrician and she ordered the testing.

I received a call today from Max's doctor stating that they found something in Max's bladder and that he will have to undergo a urethrocystogram (?). He had an appointment to she her this week so she'll tell me when the testing will be done and where. It's suspected to be a calculi that formed in the bladder. Bladder calculi (stones) and Kidneys calculi are the outcome of melamine sickening/ingestion/poisoning. He has never had any problems since being home that was detectable by us, but his history prior to coming to us is almost completely unknown. Also, Max having a communication barrier makes it difficult for him to articulate exactly what is going on with himself other than to say something like "It hurk" and pointing to a body part etc.

I'm not exactly sure what will be done, if in fact he does have a stone, but we'll see how the testing comes out first.

Sonja will be tested in the next month.

So, my reason for this post besides informing family/friends, is to urge any adoptive parent out their with a child from China during the W.H.O. stated time frame to GET THEM TESTED!!!

If your child gets sick, you'll wish you had!!!!!

Take care and take it easy!

Until next time.....

Happy Thanksgiving!!!

I just wanted to wish all of you out in the "blogasphere" a very Happy Thanksgiving!

I personally have much to be thankful for.

I'm thankful for my family first and foremost. I never thought that my childhood "premonition" of adopting from China would have actually come true. In Catholic school, We had a "feed the children" program that was, at that time called "pagan babies" (I know, I know). Anyway, you would give a daily or weekly tithe to help provide for children struggling in other countries. You would then get to "pick out" the "baby" which was a picture of a child from another country glued to a cardboard backer and it was on a stand (kind of like paper dolls. I picked out a child from China and a child from India (even at that young age, which was 1st and 2nd grade, I was fascinated by the cultures, and still am!). The only problem was that I thought I was really going to get to "have" these babies and when I found out they weren't coming to my house to live at some point, I was told by my Mom I was devastated. As an adult Dan and I were having a problem conceiving. In 1996 or 1997 a friend and former co-worker of mine Deb had just returned from China with her daughter Kate. She had offered to help me with all of my paperwork etc when we were ready as she's an R.N. and social worker. It was then I knew we would adopt from China for sure. I would jokingly say I was going to adopt a baby boy from China, dye his hair red, put some fake freckles on his cheeks, and call him "Danielsan" (get it, I know not too funny, but I'm a cornball so now you know :-). My desire to adopt a child, and especially a child of a different ethnicity, was not too popular with some of the family on Dan's side as many were of an older generation rife with racial predjudices and overtones, a frequent topic on many adoption forums and I believe one of the biggest stressors adoptive familes face. Since that time all have come to adore our children. I believe it was more to do with fear of the unknown than anything.

We didn't adopt our son first as was the "plan" (nor have we dyed his hair red or freckled his face, as he's absolutely beautiful just the way he is)but we do have our family at long last, just the way it was meant to be and according to another plan much greater than our own.

I'm also very thankful for my extended family (Mom [a.k.a. Nana], sister, brothers and cousins). They are the BEST.

I'm also thankful for Dan's family. His father and mother are so great with the kids. Max is Grandpas boy and their faces light right up when they see eachother. Sonja loves her Grandma too and especially loves to bake at Grandma house with Grandma.

And last but not least, my friends both in my day to day life over the years, and my many friends I've met in cyberspace. You have all touched my life more deeply than I ever thought could be possible from people I've never "met" and I'm happy to call you friends.

I know I've probably forgotten someone. Please except my appologies if I have.

Thank you and Much love

Until next time.....

Thank You!

I have been so humbled by the amount of wonderful people who have shown me support, especially in recent months. Many of you I have never met but you have given me great strength by your words and offer of help.

In recent years, everywhere you look is deception, cyber-bullying, character assassination, psychopathic tendencies running rampant. Suddenly, then come beautiful people who have experienced what I'm going through, many much worse, who reach out and offer help or just let you know "I've been there, it'll be o.k." and you can breathe again. They help you to see the sunshine past the rain.

Thank you for helping me see the sunshine!!!

Much love!

Until next time......


Oh...BTW.... HAPPY 4TH BIRTHDAY LUCI!!!!

TCI day and finally HOME!!!!! Yipppeee!!!!!

Sorry it took me so long to post but I've been REALLY tired. It's been a long, tough few days and I've been exhausted.

I had my visit at TCI and what a day it was. We got there at about 10:00am and didn't leave there until 7:30pm!!

I was examined first by a nurse practitioner that asked a bazillion questions and tested my joints etc. After the exam she seemed to suggest I have EDS or Ehler Danlos Syndrome, along with tethered cord and cranial instability. She lead us to the education room, which had computers with educational videos about tethered cord, cranio-cervical instability and others. They also had juice, coffee and other munchies to eat (probably due to everyone being there for so long!).
Dan and I watched the TC and cranio-cervical instability video and boy, did they ring a bell with me.

I then was seen by the neurologist Dr. Mora. He did an extensive exam and suggested bad posture and cranio-cervical instability, carpo and cubital tunnel syndromes and suggested I get a at home traction device, use wrist splints to bed, use a lumbar support pillow at all times, and learn the Alexander technique for strengthening my core muscles. This poor man always suggests bad posture for most( so I've been told), if not all of the patients he sees, but he himself is so stooped over and looks as if he needs a nap! I think he should also take his own advice, but he seems to try and help. I will take his advice.

At long last I got to see the famous Dr. B!!! He is a very nice man and very funny too! He too is an adoptive parent only his son was adopted at age 14 and is from Belfast. He has three bio children, one of which was born with Chiari! What the chances huh? Anyways, he told me that he suspects I have occult tethered cord, along with herniations to my C, T and L spine. From what I gathered, I don't have true Chiari but all of my symptoms "smell of Chiari" except I don't have the small Foramen Magnum. I instead have a larger than normal foramen magnum (of course I'd have to be different) and that I was born that way, possibly due to the occult tethered cord in the first 5 weeks gestation. That is when the FM is formed. I have tonsillar herniations (7mm) and my brainstem is elongated. It's (my brainstem) is suppose to be in my head but of course, I'd have to be different again and have it continue into my cervical spine! This is probably what is causing my chest pain and shortness of breath along with the other things (dizziness, headache,blurred/double vision, etc, etc)
I have to have more testing done (echocardiogram and urodynamics) and if my echo is good and my uro testing is suggestive of OTC, then he'll do what is called a Section Filum Terminale, which is he will cut the part of my spinal cord called the filum terminale. This he thinks will reduce the tension/pulling of my spinal cord, brainstem and cerebellum, releasing the structures so they can take their correct position and therefore help with my symptoms. He also gave me some medicine (Diamox) that is suppose to help reduce the amount of CSF I produce, to help cut down on the symptoms. This medicine is also used by people with glaucoma to help reduce the amount of ocular fluid (?) they produce.

As far as the uro testing is concerned, unfortunately no one around here does it and I will have to drive either 1 or 2 hours away to have it done :-( Oh well, at least it will be another piece of the puzzle found. If I can't get it done there, I will have to have it done in Long Island. If I have to go back there I'm taking the kids with me.

I missed them so much! They lift me up with their sweet smiling faces and little voices and help distract me from this stuff. They loved staying with G-ma and G-pa but when Sonja got on the phone with me while we were in Long Island, she sounded so sad, and she kept asking me when I was coming home and when was my Dr.'s appointment. When we finally did get home she was ecstatic and said "I missed you so much Mommy (and then to Daddy too)!" She wouldn't leave me for a second! We may have to have her miss school but I don't think it'll hurt her academically anyway, after all, it is only Pre-K!

I had some questions regarding my visit and diagnosis so I e mailed Dr. B. As extremely busy as he is, he e-mailed me back and answered my questions! Now how many other doctors in his position would do that?

I'm impressed by him and all of the staff at TCI and so happy I went there. I know if anyone can help me they can.

I'm also so happy to be home too!!!

Take care all!

Much love!

Until next time.....

Testing Day

Today was my day of testing for The Chiari Institute. We arrived early (about 1 hour) at the testing facility and I started going over my paperwork and realized I was suppose to be NPO (nothing by mouth) for the testing (I swear I'd forget my head if it wasn't attached!). I started to go into panic mode, as I thought I blew it and wouldn't be able to have the testing and possibly may have to cancel my consult all together! Dan reassured me and we went inside.

I approached the desk and gave my name and the receptionist handed me papers to fill out, etc. I returned the papers and told her "I think I messed this up really bad" and started to cry a bit even though I was trying my hardest not to. She said "nothing is that bad" and asked what was the matter. I told her about my block-headed mistake and she said "It's o.k. Just have a seat and relax", so that's what I tried to do.

I went into the bathroom and she came over to Dan and told him to tell me not to worry.

I was then called in for the testing. I changed into a lovely, blue cotton number and was lead into the MRI suite. He placed this head and neck brace thingy on me which resembled Hannibal Lector's mask and told me not to move or swallow....... easier said than done. I did my best as he told me that if I don't hear any banging, plinking etc it was safer to swallow at those times. It seemed to last forever!!!!! I was feeling really dizzy and nauseated and didn't think I could make it through. I was wishing and praying for it to be over already. I finally was finished with that test after about an hour or so. The tech, John, then told me that I wasn't going to have the IV contrast MRI because of having COPD and also because I had eaten. I guess it was more so because of the COPD than anything, due to breathing complications associated with the dye. When I went to get up after sitting up for a while, I thought I was going to fall down. I was kind of disoriented, my vision was really blurry, nauseated and I felt very off balance. I was then sent to have x rays.

The x rays were much quicker. I had to have some standing, some with my mouth open, my head flexed and extended and some lying down. I was then sent to have the 3D CT scan which was performed without a hitch.

I was in the wating area, for the tech to come out with the TCI packet and my disc and met another woman who had tethered cord and had ACDF and detethering. She said prior to the detethering she was is very bad shape. Had great trouble walking etc and her story sounded very much like my story. She had the surgeries and said she's regained a lot of her function but has perminant damage. She said she had a syrinx that occupied 80%of her spinal cord!!! For those that don't know about this stuff, that's really bad. Anyways, she's much better now and is having her daughter tested, who is 4, due to symptoms her daughter is having (poor little peanut!) I hope and pray that she's o.k.

I was surprized to be done and it was only 1:45 or so! I wish I would have felt better because I would have loved to go and see some sights, but oh well, no big deal.

W drove a round a bit and later decided to go have a bite to eat. We hit TGI Fridays and then drove a bit more. Great Neck is a really nice place. I would like to come again when we all can enjoy ourselves together as a family. We headed back to the hotel at about 5:00 and was met by the attendant Lucus again. What a sweetie! He asked about our day etc and parked our car. Up in the room, I started to look at the disc that they gave me of my tests, but just couldn't stay awake. I fell right to sleep at about 5:30.

I woke up because the cell phone was ringing. It was my sister Vicky calling to check up on us.

Tomorrow is supposed to be another long day, but I will find out what the results of the tests are and what the doctors have to say about everything. Looking at the disc, I look like I have some tethering along with Chiari, hemangioma, fractured spine but no big syrinx. If I do have a syrinx it's small. I'm nervous but I'm pretty sure I'll soon have some answers.

Hope you all are doing well!!!

Take it easy!

Until next time......

Off to get my head examined (along with other body parts as well)!

We started out early this am for our long trip to the city. We brought the kids over to G-ma's and G-pa's and they were as happy as little clams. We then loaded up the car and off we went.

As we drove, you couldn't help but notice, it was so quiet! It seemed so strange not having the sounds of little voices chatting away. The weather was cloudy and the air crisp. Kind of a sleepy sort of day. No sleep in the near future for us though.
The countryside is very calming as we drove over hill and down into the valley's. After several hours the city life was starting the take shape.
From the winding one road countryside, to four lane highways.
Even the graveyards population is greater than many of our local townships combined.
From green mountains, to mountains of steel.
As we passed the city, I wished we had the kids with us and were staying for a while, maybe next time if I have to return.

We finally arrived at our hotel on Long Island. It is very nice and quite comfortable. The staff is very nice and knowledgeable. Asking what brings us here, Dan tells them of my appointment and they immediately say "Oh they are GREAT! We have people from all over the world come here to be treated by them." Our doorman hands us a printout of a woman's business card with her website that he said she wished to share with others that are being treated for Chiari, and to bring awareness to Chiari.

We ordered room service and the food was excellent and the portions huge. We should have shared a meal as they brought up so much food. The room attendant also gave us a few salads and some tasty hummus, compliments of the hotel.

The neighborhood is very nice. Many nice shops and upscale shopping, all within walking distance. Maybe if I'm really lucky I'll get done early tomorrow and we can see some sights and take a few pictures, but I'm not counting on it.

Well, tomorrow is a long day, about 10 hours of testing, so I'm going to check my paperwork and hit the sack.

I'll try to update tomorrow night if I'm not too beat and it's not too late.

Until next time....

Max's party and other news

Last Saturday, Max had his birthday party with family and some friends. The theme was....what else....Halloween! Even though it was sans costume, they still all had fun.

Here Gracie eagerly waits for the opening of the presents. I thought this picture was so cute!!


The birthday cake! I had called up to request the "Frankenstein" cake which was a cake shaped and decorated like a Frankenstein head, but when Dan went to pick the cake up, this is what they gave him....still cute, but not quite what I ordered. That's O.K. it was just as tasty I'm sure.


Sonja baring her fangs.

Lizzie strikes a fantastic undead pose! Pretty and scary at the same time! Only Lizzie could carry that off.

Most stayed well into the evening and all had fun.

In other news....

Dan and I head out for the big city tomorrow. We'll be headed for my day of testing and my day of consults with the docs. It's going to be a long drive, but I know the trip will be worth it. I'm told the day of testing is 8 to 10 hours long, so we won't be getting back to the hotel until 9 at night. The following day of doctor consults is also about 10 hours long. One good thing though, is that I hear we'll have our own little space with a TV and remote (for Dan) and they also have a computer area with internet so I can update all of my ASAP friends! I may also post here but I'll have to see how time constraints are. I'm so nervous but at the same time excited and scared. I'm so afraid of what they're going to say. I hope it's good news, no surgery, but I'm preparing myself for all possibilities. The kids are staying with G-ma and G-pa, so they won't have to hang around a hospital for two days. I'm sure grandma will have them making cookies, going to the park and getting lots of TLC. Thank God Grandma is in good shape!

Well, I should finish packing so we can head out first thing in the am.

Wish me luck (oh and a few prayers would help too)!

Take care and take it easy!

Until next time......