Wednesday, May 27, 2009

The Wonderfully Fit Elderly

Rob has been training for his first triathalon ( So has Chris, apparently because I called him out ,on this very blog, for buying a pricey bike and not using it. So what if he already has a wife to nag him. She is my friend, I am supporting her!). It is coming up this weekend. He is pumped and excited. Really, his goal is just to finish. Not interesting in winning. Doesn't want to beat anyone. A goal for himself. I find this quite admirable. Or I did until a few minutes ago.
I was just told that there are 250 racers; not a huge race. Next, I was told that there are two 70 year old racers and several in their late 60's. Now, Rob is out to win. Or at least beat the elderly. I reminded him that there are some very fit and active athletes in their 70's ( none are related to us) and that beating them might be unrealistic. Nope. He claims that a loss to an AARP member( particularlly female Don't get me started on this...) would bring great shame upon our family.
His next proclaimation is the most startling. " If I lose to an old person, I am never working out again."
Awesome. I can see it now. Rob on the couch wearing one of those beer can hats, too lazy to replace the cans himself. Yelling to Hayden to fetch " Big Daddy" another beer. Just sitting around in his " comfies" or undies, scratching himself and talking about the old days when he used to run, bike, swim, bathe, move, leave the cuch.
With that terrifying image in mind, I am making a plea to the wonderfully fit elderly. Please,don't show off your years of dedication and training. Hold back, just a bit. Let a young whipper snapper pass you. Feign being winded and tuckered out. Basically, make my husband feel like a tough guy for taking out a few members of the geriatric set. You wouldn't want him to take to the couch or worse yet,competitive eating.
I am sure Rob ( and Chris and maybe Bush) will do an amazing job this weekend and I am so proud of him for taking on this new challenge. He is a great role model for Hayd, who is really pumped to watch his Dad race. Rob, just get out there and do your best and don't compare yourself to anyone else, especially the elderly.They atre a feisty bunch.

Monday, May 25, 2009

A Prisoner Set Free

I am not sure if that best describes Hayden or me. Both of us have been a bit batty from the self imposed house arrest. It began ten days prior to his surgery. Way back in March. We decided to avoid all germs; therefore public places and Hayden's school ( sorry Beth Sholom, we love you, but you are germy;-)were out of the question. We began to "enjoy" the life of those who have committed white collar crimes and are allowed to glimpse at the real world through their windows or front porches, but not actually participate. Having not actually committed any crime (not one we are confessing to at this time), we are free to well, be free at any time of our choosing.
This past week, we chose. I am not sure if it was Hayden stating that being home so much made him sad or me threatening to invite Robert W., the inept fridge technician, over to hang out ands drink the afternoons away (since he now has so much free time) that actually pushed us out the door. It may have been Rob's hands. Whatever it was, we reappeared in society. And liked it.
Our outings have been simple. Grocery store. Cardiology check up. Blood work. Dinner. Baseball game. 9 holes of golf. The pool. What hasn't been simple is the reaction we get from everyone. Most people comment on how great and normal Hayden looks. ( Yay!) I kind of expected that. What I didn't expect was people telling me I look good. ( Now, don't get excited. I really look the same...you decide if that is good or bad.) For some reason, people actually expect me to look like an ex-prisoner. Thus, my clean, well- manicured appearance shocks them into thinking I look fabulous. While, I do pride myself on things like bathing, wearing clean clothes, brushing my teeth and styling my hair, I have not put forth much (or any) effort regarding my asthetics since reappearing in the real world. I do wonder what I am supposed to look like. Haggard? Fried,dried gray hair? Sagging skin? Pruned up wrinkles? Excessive weight loss? Gain? Yellow teeth and nails? Dazed?
In any case, this house arrest has apparently been great for my appearance. That or people haven't seen me for so long that they just forgot what I look like.
I return to work tomorrow and fully expect to have gushing compliments on how gorgeous I look ;-) I'll need that considering Hayden can't wait to see me go so he can get back to his " regular days". Does that make me irregular? That's a topic for another post.

Tuesday, May 19, 2009

Exhausting

I find many things exhausting.
Right now, dealing with my fridge situation has become exhausting. After a weekend of running in and out of the garage every two minutes while trying to entertain ( sat.) and cook/bake ( Sunday), I gave up. I announced that I was not cooking again until I had a functional fridge in my kitchen. I do love to cook, but started to get annoyed and sweaty from having to go out to the garage constantly. Rob returned from a bike ride to " I am not cooking anymore. This is too hard. ( pout)"! He said " Ok, we'll just get take out." ( Wow, that was easy).
Ultimately, Robert The Inept destroyed my wonderful fridge. I find inept preople exhausting. Rodney The Talented Tech and Russle The Super Supervisor declared her dead. Yes, DEAD! I was issued paperwork to pick out a new one. ( I fought THE MAN and won my fridge!!). I did select a new fridge, but even that was exhausting. Had to add money and buy a new service plan. BUT the exhausting part is that they do not intend to deliver it until...MAY 27th!!! UGH. Nope. Not gonna work. I am now dealing with Dennis the Dogooder ( his name may change if this doesn't work). He is attempting to get a seperate truck to deliver my fridge, ASAP. I will call him shortly.
I am also exhausted by the company that distributes the INR home testing machine that Hayden needs so he can avoid going to the lab for blood work. They " lost" my fax three times. I finally connected with Caring Connie who let me fax it directly to her and is getting it processed. It could stil take 4-6 weeks. Exhausting.
My furniture, ordr on 2/15, is still not in. They are waiting on one piece and CLAIM it will be in by the end of this week. I cannot count how many phone calls have been made to them. I am getting a gift certificate to buy some lamps. ( That sort of thing happens if you complain enough). For now, I will enjoy pretending I am in a Japanese restaurant and just relax while sitting on the cushions on the floor in my family room. Exhausting.
Lastly, I am exhausted by being home so much. I am not a sit-stiller. I am a mover, goer, shopper, errand runner, etc. I love being with Hayden and doing things together, but staying home so much is making my batty. I hated my maternity leave for the sme reason. ( that ad the fact that I hate babies)He and I usually are out and about, but we have been keeping him home to recover and to stay away from germs. He is getting much stronger and is able to do more. We are going to start lettimg him make public appearancs this week.He should be just about back to himself in time for me to return to work next week. That will also be exhausting.

Thursday, May 14, 2009

Luck

Someone recently mentioned that I seem to have less than perfect luck. Hmmm. Really? I hadn't noticed. Bad, luck? Me? Now, I could go deep and philisophical here and point out that adversity makes us stronger, better people. Or that you aren't given more than you can handle. But, today, I just can't take the high road.
Something bad has happened and I can't rationalize it. My baby, my sweet beatiful, perfect fridge is malfunctioning. She was the result of a kitchen remodel three years ago. It took much time and research for us to decide that she was the right fridge for us. Ultimately, her stainess steel exterior, bottom mount freezer, french doors and interior filtered water dispenser ( so little or big germy hands can't touch it)won our hearts. We embraced her into our appliance family. She has become an integral part of our lives. Unfortunately, she isn't doing well. Her digital temperature display went nutso an few days ago. It was blinky at times; non-existent at others. And then it happened; she stopped holding her temperature. Much like a menopausal woman. Her erratic behavior prompted a service call. Again, like a menopausal woman. The technician ( I'll get to HIM in a moment) delivered the news that she needed a part. It would be overnighted. He would return on Friday.
Now, the technician, Robert W, wasn't exactly familiar with my preciuos baby. He peeked around and couldn't figure out what was wrong. He called the manufacturer and they gave him some much needed assistance. He thought he figured it out and ordered the part. Homestly, I wasn't impressed. He moved pretty slow. He lacked information. After he left, she really went haywire. He did not help matters. The fridge was 56 degrees and the freezer 30. It was not good. Thankfully, we kept old Bessy ( our old fridge) in the garage. She usually contains liquid joy, but had plenty of room for our food. I couldn't believe that this boob botched up my precious love. This is who " luck" sent to save my baby!
My inept technician told me to call him as soon as the part arrived and we'd set up our repair. I did as instructed and was met by ," I ordered a part?" ( SHIT!!!- That is me screaming in my head). I calmly responded by recapping our events from Wednesday morning and he seemed to maybe recall my sweet baby and her dilemna. Or he was acting. He is supposed to come tomorrow morning. I am not sure if I'll be more surprised if he shows up or if he is capable of repairing her. My luck tells me...well nevermind.
A spot of good luck has come my way. Hayden is getting stronger and more agile each day. He can now get up onto the sofa himself. Sit down on the floor. Get up from the floor. And get into downward dog ( yes, yoga is part of my home rehab program) Tomorrow we are going to focus on steps and jumping. He is working really hard and just smiles really big each time he accomplishes something. I scream really loud as if being chased by a man with a bloody knife. Hayden liks this scream and joins in. ( I never claimed we were normal).
In the end, my fridge will get fixed or replaced. That is the beauty of a service plan;luck or no luck. And, I get to scream at the top of my lungs and giggle with the happiest, toughest guy I know. Yeah,I am lucky.Sort of.

Tuesday, May 12, 2009

The Biggest Gainer

I realize that my last post wasn't exactly about Hayden, but it was advice he could use...one day.
Last night Hayden reached a post-operative milestone. I'll explain.
In our house, we are playing a game called " The Biggest Gainer". It is similar , in theory, to the popular " reality" show, the Biggest Loser. ( aka the BIG Fatties, as they are referred to by my dear friend ,who will remain anonymous, lest she be judged for criticizing the morbidly obese). Our game is a bit different. The goal is to gain weight, not lose it. ( Hayden, not Rob and I) The week is difficult; trying to suck down breakfast, 2 snacks, lunch, 2-3 snacks, dinner and dessert. It is a challenge that few could meet. ( Althought, those on cruise ship vacations usually do quite well with this challenge)In our home version, Hayden gets on the scale each Monday evening, naked. (We are skipping the team colored sports bra and matching shorts; it is the home version.) As the numbers come up on the scale, we hold our breath, hoping for significant weight gain. ( Fade to commercial for dramtic effect. I sing somethimg catchy.).
Last night was a real cliff hanger, would Hayden, who was down 10% of his body weight, reach the goal of his pre-op weight? Would he gain any weight? Oh, the drama of it all.
Fade back in and focus on the scale. Numbers spinning. Next, a shot of our faces, agonizing over the numbers. And, finally, the weekly weight appears. Did he gain?? YES! Hayden is back to his pre-op weight. Skinny, but not skinnier.
This was not a season finale. The game continues next week. Who knows, he might reach 30lbs by the time he turns 5 in 5 weeks!

Aside from gaining weight, he is also gaining stregnth and stamina. He has a sparkle in his eye and is back to being a chatty guy.( He is yelling " Come, on!" to the imaginary Terps basketball team that plays on the imaginary court in our kitchen.)He is also sleeping, peacefully, at night.

Sunday, May 10, 2009

Maternal Wisdom for All Ages

I know some things about some things and thought I'd take today to bestow my maternal wisdom upon you.
1. When wearing a white shirt and ordering an ice cream cone, know that said cone will leak upon your white shirt.
2. If you try something new at your favorie restaurant, you will regret it and wish you ordered your " old favorite".
3. Use your manners; no one resprects the rude.
4. When packing for a weekend trip, double check to make sure you have underwear. (and you should probably pack at least 4 pairs of shoes, just in case)
5. If a fire erupts on your deck, say from your gas grill, there is no shame in immediately calling 911 and also yelling that the chicken is ruined.
6. It is OK to pass the sunscreen over to those who aren't slathering themsleves. Those of the older generations, you know, the ones who Aqua Netted the giant hole in the ozone, may need a gentle reminder to put down the baby oil ( or Crisco) and use some SPF.
7. That old saying about liquor before beer; meaningless. Enough of both or either and you'll be sad. So sad.
8.Some people are huge disappointments (they will probably be related to you). Forget about them and cherish those who are good to you; they matter most.
9. If you put on a few pounds, don't proclaim that you will take them off before buying any new clothing. No one wants you to look like a sausage in your clothes,it s just gross. Buy a few key pieces and either take off the weight or embrace the new, softer, you.
10.If someone in your life adds artificial sweetener to their wine feel free to admonish them. ( do the same if they refridgerate the Cabernet)
11.If so inclined, strike up a conversation with strangers. It may embarass those with you, but they'll get used to it.
12.When frustrated, don't give up without throwing something down or growlig in frustration.
13. When your nail polish brand "goes green" and all of the colors fade when exposed to any bit of sun; write a letter of complaint. How dare they put the environment before your beauty! AND who wants to pay for a pedicure that fades after a day poolside?
14. Always ask for a discount or lower rate. You'll probably get it. Most people dont ask.
15. Haggle with your insurance company over EVERYTHING. It might take work, but they count on you lettimg mistakes slide. Most people are too lazy to fight "the man".
16. Always be yourself. Someone is bound to like you, I think.
17. Be good to your Mom. She might be a loon, but no one loves you the way she does.

Saturday, May 9, 2009

A Testosterone World

My reality is that I am just a small bit of Etrogen in a Testosterone world. Rob, Hayden, even Shiny Tale; all males. When they get together, they get a pack mentality. Sort of like wolves or wild dogs. This pack mentality targets the closest bit of Estrogen, me.
The other night I called home to remind( not nag) the boys to feed the fish. The call went something like this:
Rob: Yeah.
Me: Don't forget to feed the fish.
Rob: Really? That is why you are calling?
Me: Yes. I don't want you to forget.
Rob: Like we would forget? Good-bye.
Now, Rob does not take care of the fish. Never changed the water. He has probably fed him five times. My reminder call did not deserve what came next. My phone rang and the following conversation occured:
Me: Hello?
Hayden: Mom, don't forget you're my Mom.
Me: WHAT?
Hayden: You thought we'd forget to feed the fish, so we thought you'd forget you were my Mom. ( Naturally, this call was on speaker phone so Rob could listen in, Jackasses). IF I was going to " forget" I was his Mom, don't you think I would have done that weeks ago and run off to the Carribean? Forgotten my worries? But, no, I stayed around; only to face more from " the pack".
Often, I am told to go out; it is fellas night. And Hayden frequently says, " Mom, you are such a girl". I was told, just this morning, that Hayden and Dad have a morning routine and I am dissrupting it.But, sometimes being the only girl pays off. I was given a beautiful tiara to wear when I cook.It twinkles. I like things that shine.And last night, during Shabbos dinner, Hayden and I were chatting about genders. He told me he knew I was a girl because of my hair, and these (hand reaches and grabs my right boob, proceeds to squeeze!!!), my fingernails and pink toes. Fair enough. I do have all of those. I don't encourage the boob squeezing, but was flattered that he noticed without a magnifying glass. He is an observant member of " the pack".That bodes well for him.

Friday, May 8, 2009

 
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Hayden baseball

 
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Hairy, Scary

The three of us are hairy. Really, we are. Head hair. I don't have crazy arm hair or anything. Haven't undergone electrolysis. The boys have a bit more body hair than I do.( that is a lot of information) With that said, the boys get hair cuts every four weeks. They have gone since March 20th and are hairy ,scary dudes. Rob asked Davina, their fabulous stylist, to make a house call. So, this morning, on our deck, ala Beverly Hillbily's, the boys got hair cuts. Puffs of blonde and stawberry blonde hair flew about. They look very handsome ( although, as I type this and gaze over lovingy at Hayden, he has a huge orange Dorito ring around his mouth).While the boys were getting haircuts, I was dealing with a nurse at Hopkins and a lab here in Fredrick,IM'ing with Dayna, the carpet guys were cleaning the basement carpet and Pop arrived for a visit with Hayden. So, not only were the boys hairy, scary, but so was our morning.
Our afternoon has proved to be far more calm. While the rain stopped, terporarily, we disembarked our ark and went outside. A little bubble blowing on the front porch. A spin on our " bike" ( we are using the " little kid" bike so Hayden can get pushed, but still go through the motion of pedalling; that way it isn't too strenuous for him). A little Noggin. A snack. While the sun was shining I was reallying feeling a cocktail coming on. There is nothing wrong with mid-day cocktails? Right? At least I am at home; some of you do it at work. Alas, the sun has gone and so has my momentum to reunite with my long lost friend, vodka.
Hayden got a fabulous gift yesterday. A Terps basketball signed by Gary Williams. ( Hold your coments if you are on the fire Gary bandwagon) Thanks, Jay - that was so thoughtful of you. Hayden ( and Rob) are so excited. We are going to get a display case for it.
Hayden is doing well. We see him get stronger each day. He is eatig like a maniac. My middle of the night wake-up call wasn't until 3am and didn't last more than 30 min. An improvement. We are hoping for a nice restful weekend of just enjoying our time together, at home. And maybe some vodka. Rob intends to kick up his training; he is completng his first triathalon at the end of the month. ( still skipping the swim- re; earlier posts- for fear of drowning).Now that his hair is cut, he will have excellent aerodynamics.

Thursday, May 7, 2009

The first outing

It was to the pediatrician and for blood work, but it was an outing.Hayden had a quick check up with our pediatrician this morning ( she is awesome!) and then went for some blood work. Blood work was not that quick. Getting our info. updated in their computer sytem took forever. I was tempted to turn the computer around and do it myself. I mean really, how hard is it? Once we were entered,it didn't take long at all. They even got H's blood on the first stick and we were off.
We treated H to McDonald's for lunch.I ate bruschetta for lunch and now have rockin' garlic breath. I am chewing gum, but can still smell myself.( Gross, I know Perhaps I should have just gotten a Filet O' Fish.( more gross. What kindd if fish is that anyway?)
Hayden is improving each day. He is still weak, but we are seeing great progress. He is trying really hard. We have some brownies in the oven right now because he really wanted to cook. Perhaps, next, he'll really want to do laundry or clean! I am groomimg a fine husband for some lucky lady.
Sleep is still our problem. It is improving, but not great.Hayden was up twice last night- 1 hour the first time and 45 min. or so the second time. The first time he was not upset, the second time he was. We are hoping that each night gets better. This is much like havig a baby and as some of you know, I hate babies. No, really, I do. Go ahead, judge me, it is OK. I am really not a nurturing person. I am not even that nice.
We are waiting for a visit from Grandma and Pop-Pop. Hayden is excited to see them, Tomorrow Pop is coming for a visit. I anticipate mch giggling. Hayden will have fun, too;-)
Many of you have asked about visiting .We are trying to keep things calm right now. Plus, we are being completely germaphobic- no kids, etc. I know how much some of you want to see H, just give us a bit more time. We hope to back to " normal" soon.
I am hoping to get out to buy the G'mas Mother's Day gifts. Hallmark holiday fun.
I am so bad at staying home...
Rob is wonderful. I am not just sayimg that to make up for callig him a tone deaf narcoleptic.( Well, I am. But, he really is wonderful!!!)

Tuesday, May 5, 2009

A day at home

We have had a great day at home. It was busy; carpet water damage dudes, cleaning lady, Costco and Giant run ( this was not good for my back). Hayden has been eating like a champ and really enjoying being home. Watching TV, playing Wii and just hanging out. He is really trying to get his groove back.
Rob keeps nodding off in the middle of activities. He may had sudden onset narcolepsy ( not necrophilia, Cathy). We might have to look into this
I am in the midst of makig dinner. Quesadillas and rice. Ole.
The boys are playing Wii Boogie- a singing game. They are currently singing "YMCA"- aaah The Village People.. . Rob singing " young men, young, men".They just finished " King Fu Fighting". I had never realizd how racist that song is.Holy cow. It is ridiculous. I think I was usually ejoying a cocktail when I listened to it.
Ok. Off to eat dinnr, or fall asleep in in. Hoping for some ret tonight.
Loving the sound of the boys singimng. Well, of Hayden singing. Rob is a tone deaf narcoleptic.

There's No Place Like Home

No, I am not in the middle of a disturbing Wizard of Oz dream with those terrifying monkeys. We are HOME! At our house!
Yesterday, during rounds, Hayden's doctors decided that he could go home. It was a bit unexpected, but we were thrilled! I called Rob and told him to pack up and get down there. We had to get prescriptions filled and wait on lab results and paperwork, but were out of there by 3.
Gramasarous and Pop and Grammie Lynn and Papou were there to see us off. Grammie and Papou met us at home to help us move some furniture back into the family room
( our new furniture is on back order). Papou was a huge help in helping Rob carry everything into the house.
I attempted to unpack and the boys played Wii:-) We are stilling getting everything in it's place and I just finished drawing Hayden's meds.
We were all exhausted last night. Hayden got a REAL bath! Hayden slept about 5 or so hours on and off last night. He hasn't slept a full night in 5 weeks. It'll take some time for him to get back to that. Sooooooo, it was a long night.
We came home to a freshly wet basement. The drain by our sliding glass door was clogged with grass clippings and yesterday's rain came flowing in to the basement. ( great fun). The carpet company is comig this morning to deal with that nonsense. It isn't very bad- just abut a 5x7 area by the walk out. UGH.
We have no food in the house, so I will head out to the grocery store, soon. Can't wait to cook something!!!!!
Hayden still has a good deal of recovering to do. He is working really hard, but is weak. We can already see a difference in him since he got home. He cant do steps, needs assistance getting up from a prone position, isnt running or jumping, but is get more steady on his feet. And he is laughing. His emotions ae running high, but that is getting better. He has a doctors appt. on Thurs, and will also get blood drawn. Hayden will be on Coumadin for an indefinite priod of time and will need to get that blood level checked fairly often over the next month. (He will also have a few doctors appts.) After that, the bloodd draws should be monthly. We have also ordred a home test machine ( similar to the diabetes machine), but that will take some time to get- insurance is SLOW. I am trying to just purchase it and not go through insurance- that might speed up the process.
Off to finish taking care of " stuff". And hanging with H:-)
Will post again later.

Sunday, May 3, 2009

Day 35; Broke Routine

So I broke routine and went in a 6:30 this morning. I didn't post. Apparently, this freaked most of you out. Sorry. We are adjusting to the routine of being on the floor.
Hayden is doing great. He has no more IV meds., is off " the juice" and off of oxygen. This means he can get out of bed an do as he pleases. We spent a good part of today taking walks and going on wagon rides. he is still very weak, but is workimg hard to get stronger. He is amazing. We surprised Rob by greeting him at the elavator when he arrived this evening. After dinner, we took Hayden on a wagon ride to the cafeteria. He purchased a bag of Skittles ( yuck). We returned to his room, washed him up and he got to put on real pajamas. He told me that he woykd be wearing regular clothes tomorrow.
Hayden is down 5 or 6 pounds. If you know him, you that mens he is a scrawny little chicken. We are trying to bulk him back up to his prize fighting weight of 29 lbs;-)
We got a new room today. Our previous roomate's mother is, ummmmm, unusual. She screams all day at the nurses and doctors. They decided that no one should share room with them. We moved right next door. It is nice to be alome and enjoy some peace, quiet and privacy.
Smurfs, Canal Run Girls and Curly Girl- hope the marathon went well. Sorry about the rain. Trac- thanks for taking my spot; hope you survived. I owe you a night of cocktails!
Hopkins is randomly testing for Swine Flu. I assume this is a nasal swipe and not a body cavity check.Think I'll wear cute undies tomorrow just in case.

Saturday, May 2, 2009

Day 34; Floored

When I arrivd in Hayden's pICU room yesterday, I ws promptly told that we would need to move out of our nice, quiet room for two imto one of the " big rooms". The big room are for the mos6t critial kids, freh post ops., ECMO, etc. There were a number of kids coming in that needed to be on isolation ( due to highly contagious illnesses)and they would need Hayden's room. So, we qyicly packed up and moved. Hayden was g. Not only did he want to stay put, but the new room had some VERY sick kids and there was a lot going on. More than alert,perceptive almost 5 year old should see. He did settle down. We were not gng to be able to do PT in that room, but I was not allowng that. We had Hayden walk out into the hall where we set up ppaper amd paints. He not only walked out there, but stood for 35 mnutes painting, finger painting and drawing. Then, he walked back. Shortly thereafter, H got an ech. It looked good and cardiology told us that they were sending us to he FLOOR! They wanteed us out of that setting and moving on. So, yesterday at 3:30pm, Hayden left the PICU and moved to the regular floor.
His new room is a double, he has his OWN TV, a closet ( our junk was all over the room in PICU), a night stand, a pull out chair for us to sleep on, AND A BATHROOM. Hayden was sooooooooooooooooo excited about the bathroom, We weren't there 30 min. before he announced that he woud like to use it to poop. He had humored us with the " hospital pants" thing, but was thrilled to see a toilet ( there are none in PICU). He will still use a urinal to urinate, until his IV is discnnected), but he is getting up for bowel movements.
We do not have to leave from 7-8 am or pm on the floor and can eat in the room. So, Grammy and I ate shabbat dinner with Hayden last night. It was wonderful to here that sweet voice singing. His personality brightened as soon as we got to the floor. He used the phone to call Grammy and tell her to come down and to call Betsy for a chat. I even shared his bed with himn while we looked in his talking view finder. ( We got in a good snuggle, too!)
Our roomate is from Israel, only speaks Hebrew and is orthodox. She yells at the doctors and nurses constantly and is a bit of a problem. She refuses to let them draw blood, take temp., examine. We got " shushed" last night. But, we will roll with it.
Hayden's current task is to keep getting stronger.

Friday, May 1, 2009

Day 33; Gettin' of da juice

Hayden is now on the lowest dose of pain medicine that can run on his pump. He is on it due to withdrawal, not pain. We have been able to make a lot of weens to get to this point. It is very exciting. He is experiencing some mild withdrawal symptoms (gagging, loose stool, wide awake most of the night), so we will not be able to ween him off the juice today. We will likely leave him at this dose for 2-3 days before turning it off. Dr. Drew really needs to pay him a visit and analzye the root of his addiction. Does it stem from his childhood? His mother? Will he turn to stripping to seek attention?
Aside from some withdrawal,Hayden had a good day yesterday. They turned off his Milrinone ( The IV med. that was running to help with cadiac function- the one that they only use in PICU) and increased his oral dose of a similar med. We are playing the wait and see game, but hoping it contines to go well. All of his meds. are now oral except for his pain med. YAY!!!!!
No PT yesterday. She was off for the day. Someone else was supposed to come, but they didn't.( No surprise, but quite annoying) I got Hayden up and out and walking. He is getting so much stronger. It is fabulous. I am hoping they come today, if not, we won't see them until next week and I'll have to ramp up my "coach Mom" act.I don't mind doing it, but am pretty sure Hayden gave me an eye roll yesterday. ( In my head I thought, " Don't roll those eyes at me. I gave you those I eyes, I can take them away", but that sounded odd, so I said something encouraging and nurturing instead).
It sounds like Rob and Hayden had a looooooooong night. Hayden was wide awake ( back to the withdrawal) for most of the night. He was pleaant, but awake. This will throw him off today, but that's how it goes.
H enjoyed his late afternoon company of Pop, Grammy amd Grandma.Granparents, popsicles, books and view finders can't be all bad, right?
My back has gone piny, pingy, pop and I am fearful that I may not be able to move later today. I know I did it getting H out of bed yesterday.I fet it happen. Big fun. I could use a massage;-)(a facial and pedicure wouldn't suck, either)
The progress has been slow, but we are pleased wih any progress and hope it continues.
Off to straighten myself up( I feel like a 90 year old) and drive downtown.