WHEN does school start again?

Donna Marie’s summer school finished this last Friday and already she is in a deep funk.  She is so bored.  I tried to do some of the stuff they do in her class (some of the songs, routines, etc), but she just looks at me as if I may have lost my mind.  We try to go out but we can’t really do anything super fun (like the playground/beach) because I have her little brother (soon to 3) with us as well and they tend to take off in opposite directions. Plus I really have to stay on top of Donna because for example if she uses the slide, she will just sit at the bottom and not realize there is a whole line of kids waiting for her to move so they can go down the slide as well.  Basically we visit family or go shopping in double stroller.  Thank God I have this wonderful neighbor with a 4 year old son and sometimes we all go to the park and she helps keep an eye on my two because her son is much more independent.  I just feel bad because at times she seems to be miserably bored.  Her younger brother manages to entertain himself even though he is 14 months younger.  Any suggestions anybody?

Lastly, I don’t mean to be advertising private services on this site, but I have to mention this fantastic photographer based in Brooklyn.  What makes her so great is that she will put NO time limit on the photo sessions she books with you or your child.  She is great with kids.  She is willing to travel to your location if necessary and she is incredibly patient and talented.  Her work is absolutely beautiful and her prices are totally reasonable.  Check her out:  arphotography.us

Eye Remedy

Like many children with DS, Donna Marie has very tiny tear ducts. Some children have surgery to correct this problem. Donna Marie’s situation does not require surgical intervention. Her opthomologist recommends massaging the corners of her eyes several times a day to facilitate drainage. Our little problem is that often Donna has what can only be described as eye “crud” around her eyes in the morning. Thus every morning began the battle between me and Donna Marie. I would be after her with wipes, wash cloths, soapy water, eye drops, even baby oil in an attempt to remove the eye crud. She in turn became the most powerful child with low tone in the universe. Her eyes would scrunch up with the strength of an olympian athlete. If there was an olympic event for keeping your eyes shut tight she would win the gold. It wouldn’t even have to be Special Olympics. I am talking the regular Olympics here. If the eye crud is not properly removed and she goes to school we run the risk of it being mistaken for conjunctivitis (pink eye) and her having to be sent home. I never thought of asking our opthomologist what to use to remove the crud. Last week, my mom went to her opthomolgist because she was is going to have cataract surgery this week. She was instructed to put a few drops of baby shampoo on a piece of gauze and wash her external eye this way daily a few days before the surgery. Hearing this, I put a blob of baby shampoo (undiluted) on a baby wipe and VOILA! the crud amazingly just glides off. It does not seem to irritate her eyes or skin at all. I just wipe with another clean wipe after all is removed. We have been doing this for several days now without any adverse problems and her eyes never looked better and our morning battles are over. I hope this will be a help for others experiencing the eye “crud” phenomenon.

Ronald McDonald House

I can’t say enough wonderful things about the Ronald McDonald house where my husband and I stayed during Donna Marie’s hospital stay. (She got to enjoy the house a bit after she was discharged from the hospital.) The place was absolutely wonderful and all the volunteers that work there were fantastic. Each night there is even free dinner for the guests prepared by various volunteer groups.

REPAIR OF CARDIAC CONDITION A SUCCESS !!!!!!

The repair of Donna’s atrial septal defect and PDA was done by cardiac cath on Friday and she was back home by Saturday afternoon.  She is back to her old self.  Thank you for all your prayers, posts and concern.  I’ll post more details soon!

REPAIR OF CARDIAC CONDITION BY CARDIAC CATH A SUCCESS !!!!

Atrial Septal Defect Repair via Cardiac Cath.

Hi Everyone. My daughter is scheduled to have her atrial septal defect finally repaired in exactly two weeks. We found somebody that is confident he can do it via cardiac catheterization and has alot of experience. He is a bit concerned that part of her septal wall is quite thin but overall feels quite confident. As a back up, we are reserving OR time in case it can not be repaired via cardiac cath. In this case it will be repaired via open heart. So I am wondering what people’s experiences have been with either procedure. I know everyone’s case is unique, but I am still interested. Even though everyone tells me it is a simple fix I am still a bundle of nerves. My experiences as a nurse only make matters worse, not better! (You know I imagine every possible scenario.) I am trying to leave it God’s hands and am grateful that at least she has something which is operable. Still these two weeks won’t pass soon enough. Any input and prayers/wishes would be appreciated.

Don’t EVER try this

Well it seemed like a great idea at the time. My husband would be free from his job for a whole month. Why not schedule all those annoying appointments with my daughter’s specialists when he is at home and can watch my son so that I don’t have to drag BOTH children along to the various doctors? Soon I was on a roll. How about all those appointments the rest of the family needs? What about all those errands that we have been neglecting? Soon I had my whole calendar jam packed with stuff I would finally accomplish. Finally I would find a new endocrinologist since our old one is great but is relocating to God knows where? I would schedule a whole bunch of routine follow ups that are due for my daughter and get them over with all at once. I would finally get myself tested for that BRCA 1 and BRCA 2 genes (breast cancer genes) that my docs have been nagging me for years to look into.

I get like this. Very motivated. I was so gung ho. Even my hubby caught the fever. He was going to order yards of topsoil and finally level out the lumpy backyard. He was going to break up some of the concrete back there too and put up a new fence and help out an elderly neighbor with some electrical problems she was having in her home.

Well, nothing went smoothly at all! In fact we are about to crack up. (Well, actually more me than him. He is pretty easy going, thank God.)

Everything went awry. The endocrinologist I found was very lovely and well meaning but an absolute quack. He is very into supplements and natural stuff and as any of you who know me, know I am not into that stuff at all. My daughter’s TSH is elevated (and it hasn’t been for over a year and a half) and he doesn’t want to increase the synthroid dosage. “Lets wait and see what happens in 3 months.” Needless, to say I have an appointment with another endocrinologist this thursday to get this squared away before the low functioning thyroid affects her brain function.  I also have be CERTAIN her thyroid levels are optimal because on top of everything else, she is due to have cardiac surgery this summer.  (She has an ASD that must finally be repaired.) Anyway, some other “natural stuff” he recommended for her low GI motility has completely messed up her regularity so we are going to a gastroenterologist tomorrow just to make sure the way I had ORIGINALLY been managing it (with great success)  is fine. (You know, I am a nurse and shouldn’t of been so keen to try some of the stuff he suggested and stuck to my guns, but it is so hard when it is your own child. I also must say, the doc is very genuine and means well, but nothing he recommended made too much sense to me. Since I am in the medical field I was able to ask the opinions of other colleagues and other docs my daughter sees and confirm my hunches were correct. Anyway it is all getting squared away but there has been an appointment EVERY single day for days now.

To top it off, Murphy’s law is in effect all during this difficult time for me. Past insurance denials, that I thought were resolved resurfaced again and I must appeal again etc. Work has been asolutely INSANE. I mean there is the usual stress that I am accustomed to and I must say the hospital I work in is one of the more decent ones, but the last two shifts I had were horrendous.

I am hoping things will get better soon. So, I just wanted to warn all of you: Don’t overbook all your appointments into a small time frame!  I thought it would give me a little breather to have everything done at once and instead I am even busier than I ever thought I could be. I am up to my eyeballs in insurance paperwork and appointments and my yard is full of topsoil which is now mud because of the incessant rain we have been having.

Traveling Afghan project update

It seems that the folks running the traveling afghan project (see blog post below) have changed their website. The latest info I have is that this is the correct website:
http://www.thet21travelingafghanproject.com

Anyone from New Mexico or South Dakota?

The only two states missing from the traveling afghan project are New Mexico and South Dakota. (See the t21 traveling afghan link to the the right on my blog roll list.) Basically the traveling afghan project is circulating an afghan to families with a member with DS around the world. They are uploading photos onto the website and possibly making a book in the future. Anyway, they have all the states except for Mexico and South Dakota. They will GIVE a free afghan to both the first referring family and participating family from each of those states in addition to sending the afghan that will passed along to another waiting family. See the website for details.

DS 24/7 All Day All Night

My daughter has Down Syndrome but I can’t think about Down Syndrome all the time. She is my child. She happens to have Down Syndrome.

Sure, I love to read books about people that have a child or a relative with DS. Yes I love to see a movie or TV program featuring DS. I love reading all the blog entries contributed by people that have been touched by somebody with DS. I get a little thrill when I bump into people with DS that I haven’t met before.

This is the extent of my basic interest in DS. I have met others who have been to every conference about anything remotely to do with DS. They have traveled all over the country to be aware of all the latest reasearch and therapies. They are familiar with every specialist, every obscure therapy, every far out nutritional supplement/holistic treatment that may help DS. I can appreciate that it is very good to be aware of all that is out there, but frankly it EXHAUSTS me. Is this very terrible? I get so anxious when another parent will volunteer a list of vitamins and specialists that their child uses. I feel so clueless about all the latest research. Quite frankly I don’t follow the research that closely. I am sure if there is some wild breakthrough I will somehow hear about such a remarkable discovery eventually. Is it so very pessimistic of me to believe that there really will be no major life altering discovery about DS in the near future? Or am I just realistic? It is what it is I think.

I am just wondering how many others out there are thinking about these things in the same way that I am?

I basically trust that my daughter was born at the right time to benefit from all the programs that are out there. I am so grateful to the parents that came before me that helped get the whole early intervention programs and educational services in place. I whole heartedly trust the recommendations I get from my daughter’s teachers and therapists. I never feel the pressure to research every single treatment out there. Likewise I go to a general pediatrician for my daughter. I am an RN and I do read up on some of the recommendations for children with DS and my group of pediatiricians works along with me. I feel that I am helping the general medical community be more aware of the DS population. Why should she need a specialist? Sure we see a cardiologist and endocrinologist as needed, but for basic medical care I feel completely confident with a general pediatrician as opposed to one that specialized in the developmentally disabled. (Ofcourse it does help that I have a medical background. Even so, my group of pediatricians are wonderful and are pretty much on the ball.) I have never considered supplements and alternative treatments. I don’t believe in them. I think that is for people that want to waste money on some magic snake oil. I can understand how they may be seduced into hoping that there is some magic cure, but I for one I am disgusted by all that nonsense.

Well I have rambled enough. I just wanted to say that I think about DS quite a bit, but I refuse to obsess over it 24/7. I don’t think it is healthy. I do however love reading all the blogs about people’s personal interactions with people with DS. I can’t get enough of that sort of stuff. I guess everyone has their own way of coping. I guess I shouldn’t be that judgemental of a parent that is feeding their kid noni juice and  fish oil supplements and dashing across the country for the latest research conference. What are your thoughts on this readers out there? I am curious to know.