Baby Stuff

There isn't much we need/want in the way of baby gear as we have a lot of hand-me-downs from the other kids.  We did need to replace our infant carseat as ours was near expiration, even though it's a perfectly good carseat.  Carseat safety is not something I compromise on.  We went to Babies R Us yesterday and there were having an amazing deal where if you return a baby item such as a high chair, carseat, crib, ect... they will give you a 25% off coupon on anything in the store.  This was fabulous as we could donate our old, nearly expired carseat and purchase a new one with the coupon!  We also needed to get a single stroller, as all we have are umbrellas and a double that is difficult for me to push.  Carseat/stroller shopping was quite depressing for me.  I realized how badly my arms and hands have atrophied from lack of use.  It was very difficult for me to unsnap the carseat and stroller straps just from strength alone.  I will have a much longer recovery time once I get the surgery.  We ended up buying a Jeep Jogging Stroller because it was very lightweight and very easy to push, and a Graco Snugride carseat because it was compatible with the stroller.  I also got Charlie a few preemie outfits to wear in the first few weeks, and a womb sounds bear.

I still need to buy a Mei Tai (Babyhawk) carrier, a new moby wrap, a steamer for the placenta, pills for the placenta, new drawers for the baby clothes, some new cloth diapers to replace the ones that are wearing out, and some miracle blankets.  I can't believe in as little as 10 weeks he could be here!  My doctor is pretty sure I'll deliver between 35-37 weeks, and that is only 10-12 weeks away!

Rheum. Appt!

I was extremely nervous all night and this morning preparing for my appt with Dr. Hurley.  Both Chris and I were expecting to be told that he couldn't help us and to go back to my PCM.  I brought the DVD of my MRI as well as a list of all the things the have been shown to be caused by me having Ehlers-Danlos since a lot of doctors try to shy away from that diagnosis since it's "rare".

After a thorough exam of all my joints he said, without a doubt, I had EDS.  What he is concerned about is if it's EDS and also RA.  The problem being there that the treatment for RA is contraindicated for EDS.  He said the RA would be confusing if I did have it as my body is not responding as if it were RA.  Only three joints are currently affected and only one of those has swelling.  The MRI did show a lot of inflammation in my elbow, but that could be a symptom not necessarily a cause.

He ordered another MRI to image my wrists and he's perplexed as to what is going on there.  He said the MRI did show that my tendon in my elbow is stretched out (a symptom of the EDS) that is repaired by surgery.  Also my Synovial Membrane, which is supposed to be paper thin, is now an inch thick.  That's what the two masses in my elbow are.  He talked about certain drugs that may make the swelling decrease, but may exacerbate the EDS.  I asked him about surgery and he said that a surgeon could go in and repair the Synovial Membrane, basically by removing the excess parts.  I have no cartilage left in my elbow though.  It is completely gone and he said once it's gone there is nothing to you can do to bring it back and no way to artificially produce it.  So my two bones will be rubbing up on each other forever basically.  He said there are things they can do during surgery to help the situation but I may never gain full mobility back.  The pain should definitely decrease once they do repairs though, so I'm thrilled with that.


He's referring me to a hand surgeon to discuss surgery (!!!!) and he said that this hand surgeon is the only one he'd send his wife to so that makes me feel comfortable.  My MRI is scheduled for the 8th, and hopefully I'll meet with the surgeon soon after to discuss surgery! Maybe there is a light at the end of the tunnel!

I'm quite lucky!

I am quite lucky to have amazing friends and an amazing husband.  Chris has been really concerned with how upset I've been lately and today was an especially hard day.  As my appointment with the new doctor looms closer I get more worried, not less.  I worry that I'll get the same response I've gotten from 7 doctors in the past, "You definitely need help, but I don't know enough about EDS to be the one to help you."  At this point I just need him to approve the surgery and find a surgeon who is familiar with Ehlers-Danlos.  As I tend to do when I'm anxious, I've just shut down the past few days.  This morning I just lost it and couldn't really articulate why I was so upset.  It's very hard to explain what the loss of major body parts is like.  I literally am reduced to reading, getting online, or watching TV unless I take my pain killers.  Cleaning, playing with the kids, carrying things, even lifting my arms up are nearly impossible.  And then someone made a pretty nasty comment to me today and while it didn't bother me that much as I don't think highly of the person anyway, I know it won't be the last time I hear the same comment.  That I'm selfish and irresponsible to have kids since I have a genetic disorder.  In the state I'm in, yes I would agree.  Right now I'm not in a good place but this isn't a state I plan to be in for the rest of my life.  There is a treatment, surgery, that I plan to get to correct my wrists and elbow.  Will I ever be completely 100%? No, but who is?  What family doesn't have health issues?  Right now mine are just abnormally bad and we're working on it.

Well, Chris and Kenny decided to surprise me tonight and Kenny took me to Kahns - this delicious Mongolian BBQ restaurant that Chris won't take me to because it doesn't agree with him.  I had a surprisingly great time and Kenny and I discussed religion, touched on politics (which is a taboo subject between us as we never see eye to eye), our families, and what we were hoping to do in the future.  Kenny is really one of my two best friends, and I love having a guy friend that I'm that close with.  I love that he's really good friends with Chris too, and that there is zero jealousy there.

When I got home Chris had cleaned some (!!!) and then we watched "House" before he went to bed and I took a painkiller to finish cleaning as I didn't yesterday.

Tomorrow my other best friend, Sandra, is helping me since Chris is flying.  She's taking Anthony to and from school for me.  It's not easy for me to ask for help or to let others know that I'm not 100%.  It's a pride thing for me.  But I am extremely lucky to have an amazing husband, and two very sweet and supportive friends.

Well it's official.

After nursing for 3.5 years straight, 18 months of nursing two kids at the same time, my nursing days are over (for now).  David has not been impressed by the lack of milk brought on by the pregnancy, and Anastasia is fully embracing leaving babydom behind.  She tells me that nursies are for baby Charlie now - although occasionally she still talks about them as if she still gets nursies.  She hasn't asked in a week, and David hasn't asked in three weeks.  We always joked that David would wean before she did, I just never thought it would be so soon.  In three more months or so I will resume my nursing status with my newest son but it's still bittersweet to end that relationship with two more of my children.  It's a relationship that once ended will never be repeated again.  One day, I hope, Anastasia will continue by nursing her own children but David and Anthony will never experience those incredibly sweet moments where it's just you and the baby, they'll never experience that pride that comes from having your infant weighed and knowing that the weight put on was because your body did was it was supposed to do.  For my boys the nursing journey is completely over, I only hope that they'll be sweet and supportive of their wives when the time comes.  For my daughter OUR nursing relationship is over but hopefully her journey in breastfeeding is just in hiatus.

Productive Sunday

We have slowly been unpacking since our  move in November.  Our bedroom and the garage were the only two rooms left to really organize and unpack, and as I'm the organizer in the family it's been going to the wayside with my arms being so bad.  On Sunday I got the urge to really deep clean and organize so I took my percocet and got quite a bit accomplished.  Our garage is going to have to wait until warmer weather to really get the clean it needs, but our room is nearly done.  Chris rearranged the furniture for me the way I wanted it.  I gave up my huge sewing table so we could use it as the family puzzle table instead, but thats okay.  I'll just sew on the dining room table when I want to - it's a perk of only having a one story!  I was able to get rid of most of the odds and ends in our room, and I know a good solid half hour of working on it today and it should be done.  I love the placement of the furniture, it makes it feel like an actual bedroom for the first time since we moved in.  And it's all placed in a way that will make it a nice relaxing nursery set up for Charlie too.  I also, finally, got all caught up on the folding of laundry.  Laundry is very tedious on my arms, and my hands tire quite quickly.  Chris and I are not the same when it comes to clean and organized.  He has his places that he frets about and I have mine - the two do not overlap at all. When he gets off work today I'll take another pill and deep clean the bathrooms and finish our room.  I should be able to take a break then - from cleaning and from pain killers - until Thursday which is when I hope to get good news from my doctor!

All Time Low

I haven't written because I've been in quite a slump the past few weeks.  At my last OB appt I broke down in tears because the pain I've been in has been so severe and debilitating.  My OB was rightfully concerned and put me on a long term prescription of percocet.  I'm not a fan, at all, of any medications - but it's gotten to the point where I can no longer function.  He assured me that Charlie was going to be fine, and maybe even better off because my stress would be down.  He told me that if the percocet didn't work they'd put me on morphine patches.  I know a lot of my EDS friends are on morphine patches and it is not something I want to even think about for many many more years.  I only take a percocet when Chris is home, and the pain is really terrible or I need to get things done.   I can no longer drive as the emergency brake, shifting from drive to reverse or park, and carseats make the pain unbearable.  Turning the steering wheel even dislocates my wrists further.  Its hard to feel like a productive person when you become limited in so many ways.  We are now considering pulling Anthony out of a school we love to transfer him to a school closer by since Chris is having to take him and pick him up.  On Thursday I meet with my new doctor and hopefully he'll know enough about EDS to recommend the surgery.  Otherwise I'm not sure what we'll do.  I've already seen most of the rheumatologist in the area - none have the knowledge to treat me.  I know it's so frustrating for Chris - watching me being so upset and having to take on nearly all the household responsibilities.  I watched, "Mystery Diagnosis", when they featured a lady with EDS.  She reminded me so much of myself.  She's had 40 surgeries to help correct issues, but said that they did help.  I just want the pain to go away, even if I never regain full function again.  I can no longer wear my supportive braces as both wrists are so badly sublexed the braces create a blinding pain as they try to force my wrists into normal position.

I had my Peri appt last week.  Charlie looks good :)  Unfortunately he is already head down and very low - pressing against my cervix.  So now we have to be extra vigilant on contractions and pressure and hopefully avoid pre-term labor issues.

Date Night and MRI.

Last Thursday I had my MRI done.  It nearly didn't happen twice. A radiology tech came out to talk to me and heavily tried to talk me out of having the MRI done since I'm pregnant. I understand the reserve, it's not like I'm itching to get it done, but both of my OB's and my PCM assured me it was safe.  Without this MRI we have no idea how bad my elbow is.  I had to sign a few consent papers and then we went down to the MRI truck.  To do an MRI on your elbow you have to lay on your stomach, which wasn't going to be fun - but I'd manage.  However, my arm doesn't straighten and it took quite a while trying to figure out how to fit it into the machined.  At one point they were talking about canceling, but when I asked what my other options for finding out the damage - and learning there were none - we managed to maneuver me into a position that would allow my arm to fit.  It required me sort of laying on my stomach with my arm over my head, and my shoulder slightly dislocated but we managed to get it done. My face was so close to the side of the machine I could have licked it, so I just closed my eyes and tried to pretend I was somewhere else.  I should be getting the results soon.  I'm hoping its correctable by surgery.  If surgery is a possibility I'm going to have them MRI my wrists and see if that needs surgery at the same time.

On Saturday Chris and I had a rare date night out by ourselves.  The last time we were able to go out without any kids was to see, "The Dark Knight" before David was born - so it's been about 18 months.  Kenny offered to watch the kids so Chris and I went to see "The Imaganirum of Doctor Parnassus". I really enjoyed it but it's not a movie I think too many will enjoy. Gilliam is definitely in his own world and you really need to appreciate that kind of personality to enjoy the movie.  Afterwards we went to Genji Japanese Steak House which was absolutely delicious.  It was so nice getting out with just Chris. We plan on doing it one more time before Charlie gets here (Bon Jovi concert!).  Once Charlie comes I won't be able to go out until he's at least a year old.

Ehlers Danlos

Around a year ago I began having issues with my elbow. I would go to straighten it and there would be immense pain, a pop, and then it would straighten. I was told it was due to the Ehlers-Danlos and was placed in physical and occupational therapy. For the past year I've been in and out of PT and OT, used hot and cold treatments, compression therapy, and drug therapy. My elbow, and both wrists have not been able to be rehabilitated. I DID rehabilitate my legs after losing my ability to walk last October. I've been trying to get an appt with Ortho to discuss surgery but they kept denying my referral. My doctor finally had me come back in to discuss other options, and took one look at my elbow and freaked out. He said it's pretty much completely destroyed. He thinks the joint is completely gone, the muscle, tendons, and ligaments are torn, and he's not sure they WILL be able to fix it. I have an MRI on Thursday to see the extent of the damage but he assured me if it can be fixed it will have to happen surgically. My wrists are not as bad and may require pins/wires, or a fusion.

This is a picture of my left wrist, the worse of the two. A STUPID friggin doctor decided he would treat me as an RA patient because he didn't want me to be affected insurance wise as an EDS patient (even though my insurance is tricare and therefore not an issue). I trusted him to not do anything that would be BAD for my EDS but he did it anyway. I was given a cortizone shot in my wrist that completely destroyed it, and was only told afterwards the EDS patients should not use steroid treatments as it erodes our joints quicker. This is the damage left. This is my wrist in normal relaxed mode, I can no longer bend it the other way at all.

And this is the range of motion I have in it.

This is my right wrist, its not as bad, but it has lost some range of motion. However, the bone protrudes quite a bit, as you can see (it's not super clear in this picture).

And this is my elbow. I have both arms raised so you can see how bent it is. It's permanently in this position. This is my dominant arm and I have now had to learn to use my left hand to feed myself and so forth as my arm no longer bends to reach my face. (you can also see how bent my wrist is) Ignore my face, Chris got me mid blink.

I tried to get a picture so you could see how swollen it is. You can see my bone, and then next to it is a huge mass of swollen tissue.

And this is me trying to supine my arms. My good elbow is supined, but my bad one no longer can. The joint is so bad I can't turn my arm over palm side up any longer, I can only swing it out and in, using my shoulder.

Family Day Out

Anastasia has been asking us for months if she could get her ears pierced.  She had it done as an infant but at 8 months we took them out and let her ears heal up.  A few months ago my friend had her daughters ears done and since then Anastasia has been begging to get hers done as well.  We kept telling her that it would hurt, but she didn't mind.  We told her if she still wanted it done after Christmas we'd do it.  The day after Christmas she asked again, so yesterday we decided to just do a family day out and pierce her ears at the same time.  

It was -15 out so we took her to the indoor mall instead of the outdoor one.  I was so worried that she would get one ear done and then decide it hurt too much to do the second one.  She was such a trooper!  She didn't even cry with the first ear, she just shut her eyes tight, and cringed just a bit with the second ear.  She's so proud of her new earrings.  She didn't want to even sleep last night because we warned her that she can't touch them or they'll get infected.

 Afterward we took the kids to the food court to each lunch.  I wanted to take Anastasia somewhere more special, since we were calling this her special day, but she wanted Burger King - so the food court it was. Chris and I were planning to take the kids to see a movie at the base theater, Planet 51, but Chris read some pretty horrible reviews so we went to see "The Princess Frog" in the mall instead.  It was a really cute movie.  Anastasia cringed at the alligators, and David fell asleep half way through, but for the most part the kids loved it.  

After that we looked around the mall for a bit, and then we headed out to Walmart.  Chris needed some new socks, and he got me a pair of comfy sweat pants too!  We decided to continue on the family day and picked up some frozen pizza to do "pizza and movie night" at home.  Unfortunately we chose "Beverly Hills Chihuahua" which the kids loved but Chris and I couldn't sit through.

The kids were exhausted by the end of the day, but we all enjoyed ourselves.  

Today we packed up Christmas, took down our very dead tree, and put away the decorations.  Chris can't toss the tree on the curb until we cut some of the trunk off to decorate for next year, which he plans to do tomorrow.  My front window is still decorated with the artwork we did, and as soon as I snap a memory picture that will come down too.  I need to find a valentines art project to replace it.

Tandem nursing

I have been nursing every day of my life for the past 3 yeas and 5 months. Sadly, I think this may be coming to an end.  I started this pregnancy fully expecting that when the babe was born I would end up TRIandem nursing - now I'm not even sure I'll be Tandem nursing.  Anastasia is down to only nursing a few times a week - and only for a few seconds at that.  David will nurse if offered to him, but never asks for it anymore.  He was never as much into nursing as Anastasia was but I wanted to nurse him until he was at least 2. It seems the dip in my milk supply, due to pregnancy, is deterring him.  He is down to nursing only once a day now, and it's only snacking really.  I knew the day would come when they would wean, I just didn't expect that both of them would do it at the same time! I know we still have a few more nursing sessions left, but it still saddens me that this chapter in their lives, in our relationship, is coming to a close. 

Just a few of the pictures I have of us nursing over the past 3.5 years.  I need to take some more before it's too late.