Posted by parents at 08:19 PM | Permalink | Comments (0) | TrackBacks (0)

We are a family with sensitive skin. Robert and I must change shampoo brands out regularly or get red ichey bumps in our scalps. I never use dryer sheets or we all break out in itchy red bumps. Well Miss Hannah has taken this sensitivity to a new level.

Hannah breaks out from almost all soaps and most synthetic fabric. But her main source of skin irritation is in latex. This substance is more common then most realise. It is in elastic. Her grandfather makes her slacks. He buys a latex free elastic to make them with. The clothes in the marketplace never let you know if there is elastic hidden anywhere on them. I usually can get away with buying her shirts. As long as it is 100 percent cotton. Well, last week I bought some cute shirts with hidden elastic in them. One had loops where the buttons feed in that were elastic and the sleeves had tapered ends with elastic. I fixed the problems with a pair of scissors and the ragged edges don't look too bad. I'll hem them eventually.

To top it off, we think the fabric on Hannah's wheelchair is causing her to react.

Her grandfather is working on slip covers for it.

If I ever get the time. I think I might want to start a campaign about clothing/fabric labelling. We can't be the only ones reacting to this stuff.

--Mom 

Posted by parents at 10:04 PM | Permalink | Comments (2) | TrackBacks (0)

 As I was driving with the kids to pick up my computer from the Geek Squad (Long Story Don't Ask) I hear this cheerful little voice say "Momma". It was Hannah. I'm still new to her clearer voice. I glance in the review mirror and say.

"What Hannah?"

"Woooooshh Woooshh Wooosh!" She says. It sounds like a cappuccino machine whipping up froth milk.

I giggled. "Ok, Hannah. Woooooshh Woooshh Wooosh!" She has been experienmenting with sounds since the recent operation and this is one of her new favourite. I know it doesn't mean get coffee because that is not her thing. I think I figured it out though, it makes Robert, Gabriel and I laugh. She is trying to get us to laugh and of course we repeat it back which amuses her.

She must of thought the moment needed a release or at least her brother needed a break from the barrage of questions I gave him about his first day of First grade.

--Mom

Posted by parents at 08:54 PM | Permalink | Comments (5) | TrackBacks (0)

We had a funny experience at our house the other night. Robert was being a sweetheart and cooking diner. He suggested we listen to the last NPR recording of "Wait Wait Don't Tell Me." It is a comedic game show based on current events. Robert and I both at some point laugh at it when we are listening to it. So we set his MP3 player to play through our under-the-cabinet CD player using a FM modulator.

Meanwhile, Gabriel was in the family room playing a Wii game on our TV, and Hannah was watching our portable DVD player on the floor (They Might Be Giants new DVD). Our kitchen and family room are one big room, so it was a little noisy. I took a dining room chair close to the kitchen counter radio to hear the NPR show while I played my Nintendo DS.

When it was time for dinner, we all paused and went to the table except for Hannah; she had fallen asleep. We had dinner; then cleaned up. Gabriel returned to his game, and I returned to my place by the radio. Robert moved a chair over across from me and started playing his Nintendo DS. At some point, Gabriel saw what we doing. He pulled a chair over by Robert and I, and he brought out his Nintendo DS and started playing it.

Ah, there is nothing like the nostalgia feeling of a family gathered around a radio: with little modern tweaks, of course. Gabriel keeps asking when are we going to do it again!

--Mom

Posted by parents at 09:12 PM | Permalink | Comments (1) | TrackBacks (0)

Gabriel has been an amazing big brother of late.

When he builds a fort he wants Hannah to come in and share it with him.

One of his latest ideas is to turn the family room floor into a jumble of all the pillows in the house. He takes the one pillow from his bed. Then he grabs Robert's and my pillows from our room. Next comes the six pillows from Hannah's room. That is followed by the three pillow wedges from various rooms. He tops it off with all the pillows from the couch. Then he proceeds to dive under and recline on them. Then he insists Hannah be put in the middle of it. She rolls around and over them which I believe is good for her spatial awareness. He has essentially made a rolling child's obstacle course. Once he is bored with the rolling and lounging, he starts hiding their toys in various areas beneath the pillows to hunt for them. Hannah just tries to get his action figures and tries to see how long she can chew them before she is caught.

He has started having conversation with her. He does both parts. He gets annoyed when I'm too close, but it is great to watch Hannah's face while these quote conversations are going on. She rolls her eyes sometimes, will clap her hands with excitement or just laugh at him. He loves to make Hannah laugh. She likes to do the same to him.

I must say that this makes me happy. I never expected my children to like each other. I'm an only child and just watched most siblings argue. I know this a honeymoon period. When she starts walking and destroying his stuff, things are going to get real heated. For now, I'm relishing the time of bliss between the siblings.

--Mom

Posted by parents at 12:27 AM | Permalink | Comments (1) | TrackBacks (0)

Monday was Hannah's second trache hole closer surgery. She was amazing. She didn't complain as we headed to the hospital. She was calm waiting to check in. In the day surgery room we share with other weeping and disoriented kids, she played the princess. She wanted singing. She knew we had  her portable DVD, and she wanted to watch her Hannah Montana concert DVD not whatever was on PBS. Robert and I, her courtiers, complied.

She was given the relaxation medication before heading down to surgery. Her balance became precarious and she fought laying down. By the time we reached the pre- operation room, her eyes were glassy as she was checking out her hands. The surgeon laughed. "You were given something Hannah, I don't think I've ever seen you that still."

The surgery was quicker then expected. That was new for us, and after thirty minutes, I was called to the recovery room. I was informed that she breathed for herself throughout the surgery. I was so proud. She was waking and her voice was clearer with the trache hole closed. She woke agitated. They put her in my lap to calm her down. Between my singing, her Mp3 player, and the pain medication she was happy.

The nurses enjoyed her player and asked me to turn it up. Within twenty minutes Hannah, was sitting upright in her bed wiggly her head. This is how she dances. Every now and then she said "Go Out."

I think it is one of our fastest surgery trips.

--Mom

P.S. The doctor mentioned it took a bit to get the IV in.

Posted by parents at 11:36 PM | Permalink | Comments (2) | TrackBacks (0)

Up here in the Northwest it has been that time of year where the smell of cotton candy and funnel cakes fill the air. Carnival season is here. In the past couple weeks we have taken the kids to the local carnival and the one just over the border in Washington. I think we are revelling in our new family freedom.

Gabriel has been hopped up on sweets. He loves carnival food. Give him blue cotton candy and an elephant ear and he's a happy boy. (No I don't let him have both on the same day) Hannah's been rocking to the live music. She loves the people watching till she hits a wall and get's way too mentally stimulated and demands to go home or at least to the bathroom to get away from it all.

Something I'm proud about is I got her on a carousel. Gabriel cheered and babbled non-stop to her while she closed her eyes and took in the breeze on her face. She didn't laugh she didn't cry she just absorbed and processed later. I got a hug and kiss when it was done though.

--Mom

Posted by parents at 08:42 PM | Permalink | Comments (0) | TrackBacks (0)

Last week, I took Hannah to a post op appointment with her ENT(Ear,Nose,Throat) surgeon. I knew we would have some surgery news, but the news he suggested was unexpected. She still has a millimetre size hole in her neck. Hannah won't let it close. I was expecting that the doctor was going to decide to put another stitch in. Nope: it went like this.

The doctor examined her stoma (the hole in her neck). He sighed, straightened in the chair, and backed up toward the sink, resting his right arm on the counter. He looked at the ceiling then stared at her.

Gabriel was demonstrating to the doctor how he could make Hannah laugh. Hannah was laughing at him.

The doctor said "Hannah," [dramatic pause], "what are we going to do with you?"

I laughed. "She always does this to you guys." I'm sure I could see the gears in his head spinning like a person grasping for the solution to a puzzle.

He came to a decision in his head and said, "I'm going to have to go in, cut the whole thing out, and sew it straight."

I interpreted is this as: he is going to cut all the scar tissue out, making a slit in her neck, and then suture those edges together. It is a good idea. Surprising, but a good idea nevertheless. I had a staring off look because I'm a visual thinker. "Ok" I said then my practical side commented "Is that an out patient procedure or will she need to stay in the hospital?"

I'm not sure which he was responding too but he explained further. "Just a stitch won't work because it is healed all the way back."

I visualised this again. The stoma has surface skin all the way around and through to the trachea.

He continued as I adjusted Hannah who was slipping off the examining chair. "It will be a day surgery? Do you have any vacation plans?"

So Hannah is going to have surgery again and all I think about is where are they going to put the IV. Since Hannah has had several surgeries when she was small and she has my fast clotting blood, it is very hard to get an IV in her that works.

It has to be done but it still sucks she has to go through that again.

--Mom

Posted by parents at 10:23 PM | Permalink | Comments (3) | TrackBacks (0)

Posted by parents at 11:54 PM | Permalink | Comments (0) | TrackBacks (0)

A while ago Gabriel asked me to draw him a picture. He wanted the picture to include: Robert drawn as Luigi helping Gabriel drawn like Mario from the video games Mario Bros. So one day I was avoiding doing work and started to draw the image poster size. (The reason for this size was to replace a picture of a pirate on his wall that scared him half the time.)

I liked how it was looking and checked in with my boss Gabriel to see how he liked it. He smiled "That's great, Mom, but where are Hannah and you?"

So the scene grew to include Hannah as princess Peach and me as Toadette.

It is sweet that he wanted to include all of us in his imagination play.

While I was working on it and left it sitting around Robert and I would find him crouched down next to it telling stories about all of us in Mario Land.

--Mom

Posted by parents at 10:17 PM | Permalink | Comments (0) | TrackBacks (0)

We started slow

The water felt great!  No red bumps from the chlorine!

We went in deeper!

Gee, This is fun!

 This summer seems to be a wealth of new experiences

--Mom

Posted by parents at 10:12 PM | Permalink | Comments (0) | TrackBacks (0)

As I have mentioned several times before I am a book-a-holic. There is no twelve step program needed, my children and husband come first. House cleaning rarely does. I find having a good book in progress keeps me grounded. My mind gets to have a vacation if my body doesn’t always get to.

My favourite genre is Fantasy. Anything with some wizards, dragons and a few fairies can hook me in seconds flat. Lately, the books that have been captivating my attention are not found in the regular Sci-Fi/Fantasy section. The books I've been excited about in the past few weeks are found in the young readers or young adult section. They are fantasy, there has been an expansion of good fantasy writing categorised in these "childrens''" sections.

Some of my friends, who get caught up in labels, need a little push to expand their minds and get past the labels retail establishments put on books to shelve them. When I say something is a great read. I'm not kidding. If you love the genre like I do, the fact that a book is in the children's section of a bookstore should not get in anyone way of reading it.

With that said I would like to put forward for your consideration the book called The Warrior Heir by Cinda Williams Chima. I had picked up the book several times at the book store and read the cover and set it back down. War books are not my thing. So I would set it back down. Then I would pick up the Wizard Heir book and realise it is the second book and set it back down. I had done this several times over the year. This month I decided to buy the first book.

It is not about war in the traditional sense. It is about a boy thrust into a world of mystery and court type intrigue. I was hooked with in the first paragraph. I was pushed through the book with captivating questions almost answered. I liked that main character had family who loved him to deal with along with everything else. I immediately bought the next book when I was done and devoured it too.

--Mom

Posted by parents at 10:52 PM | Permalink | Comments (0) | TrackBacks (0)

Gabriel had a two week acting class that ended last Friday with a funny production of Snow White. The kids had helped develop the dialog and the instructor warned us all that he had no idea what any of them would do on stage.

Needless to say it was hilarious. I will do more recaps later but tonight I got to witness a rare treat.

Part of the class involved singing the song Hello Dolly from the play of the same name. Instead of singing Hello Dolly the class would substitute the name of the classmate. Well tonight Gabriel started singing it to Hannah. She lapped it up with loud chortles and cheers. She did long extended giggles. He finished with the dancing number. He went to do a second round. But, Mommy gently reminded him that she was trying to wind Hannah down for bed not up.

"But, she loves it Mom!" he exclaimed exuberantly.

He is right of course and it is always wonderful when siblings get along.

--Mom

Posted by parents at 09:38 PM | Permalink | Comments (1) | TrackBacks (0)

In the past couple weeks Gabriel has performed in a play as the result of an acting class. Hannah has gotten more stable standing where I can hold her with her arms straight up rather than at her hips with no worries of dislocation and easier on my back. Both kids have gone to neighbour's house to play in the kiddie pool. I took Hannah into a swimming pool for the first time. Gabriel has discovered a dozen new ways to get Hannah to laugh.

I haven't shared any of it. I've wrote the blogs in my head but haven't typed them out. I have been diverted at night. I have been playing video games. I know it is a shock. After a day of being Mommy, I like to sit down with a moving puzzle and zone out for a while.

My latest diversion is The ancient quest of Saqqarah.

I've have freed all the gods so my blogging should pick back up.

--Mom

Posted by parents at 09:29 PM | Permalink | Comments (0) | TrackBacks (0)

Today when I went to pick up Hannah from school she wouldn't look at me. She was seated on her blanket on top of bark dust chips in the playground. I would try to catch her eye and she would deliberately turn away.

Until I put my hand down and scooped up the wood chips and dropped them down. She shook her head at me and tried to bite me.

The onlooking nurse said "She has been great at not picking up the bark dust, today."

So my four year old was giving me a lesson in playground rules. I tried a couple more times and each time she admonished me.

It made the nurse and the onlooking PT(Physical Therapist) laugh.

--Mom

Posted by parents at 09:13 PM | Permalink | Comments (0) | TrackBacks (0)

Mom announces it is time to get ready for bed. Hug your sister and stare at mom incredulous and say, "But Hannah is just about to get married."

Ok, you got your mom hooked now. Especially, if you are a boy, she is not expecting this and doesn't want to give gender specific messages on play. She will comply more so with this tactic. Note if you are a girl try announcing you need to reconfigure the computer.

Mom intrigued will say something like, "Wow, Hannah is getting married. Who is she marrying?"

Smile and look at the toys surrounding her quick. Focus on the one she is currently getting the most entertainment from. "Ah her, rabbit Mp3 player."

Mom will shake her head in agreement, "Good choice. Hannah does love music. Let's do the wedding after everyone is ready for bed."

What a curve. I can't let mom get the upper hand. Oh I know further distraction,. "I'm going to get married, too."

"Wow, this is a big day. Who are you marrying?"

"Um, my girlfriend."

"Who is your girlfriend?"

Ok, Mom is really into the details. I don't have an answer for this. It is time for another distraction, "Hannah is going to have a baby."

"What?"

"She is going to have a little boy. So we need to give her toys at the wedding for her baby."

"Well we better get ready quick."

--Gabriel tactics related through Mom's perspective.

Posted by parents at 08:12 PM | Permalink | Comments (2) | TrackBacks (0)

Three weeks ago, Hannah had a post operation appointment with her ENT (Ear, Nose and Throat Doctor). He was the person who had made her trach hole originally, and he was the one who stitched it up. Things were going well. Unfortunately, Hannah has been attempting to breath through the hole in her neck still. So it hasn't closed completely.

The doctor examined it and said, "It looks great, but there is the smallest of holes." He went to the counter and pulled out a long stick.

"What's that?" I asked

"Silver nitrate," he said matter of factly

Internally, I was scratching my head. At home, those sticks were used to burn off
granulomas. Granulomas are these bloody bumps created by big holes in a person's body. They are essentially tissue the body is trying to heal itself that the tubes interfere with.

"What are we doing?" I asked quickly as I got a more protective grip on Hannah. That last time I let one of those things be used on her she screamed like it was extremely painful. I hadn't anticipated or told Hannah there would be pain that day. I like to warn her.

He looked at me casually. "Oh, I'm going to rough up the edges in there so maybe we can heal the hole without having to stitch it up."

That made sense. I looked at Hannah, "This might hurt" I gripped her tighter in the chair that had no way of supporting her.

He stuck the stick in, and the hole blackened. She didn't scream or even squirm.

"Ok, I want to see her in six weeks." said the doctor.

I looked at my father in-law and children. Everyone was in a good mood The appointment had been maybe five minutes. The day was beautiful, and we had drove all the way to Portland for it.

So I said, "Let's go to the zoo!"

Gabriel cheered.

Zadie was helping me out because I'm not ready to leave Hannah alone in the backseat of the car for over ten minutes. She needs a medically trained adult next to her. So I can't drive and take care of her at the same time.

When we got to the zoo, Zadie unloaded Hannah and mentioned something about tarnishing. I got us our tickets, and we went inside. For some reason, people were giving us a wide berth: wider than normal. I went to wipe Hannah's face of drool and noticed why: she was bubbling black stuff out of her trach and spreading it with her saliva.

She was in a great mood and felt fine. It just was a little alarming of a sight.

That night, Robert said, "Hannah has a black hole in her neck." We proceeded to wonder what the properties of a neck black hole would be. Yes, we are nerds: through and through.

--Mom

Posted by parents at 01:48 PM | Permalink | Comments (0) | TrackBacks (0)

Sometimes I think I'm getting myself together and the universe slaps my arrogant thoughts away.

Robert and I are now having less help with Hannah at night because she is doing really well. This means more all night-ors all week long. Hannah still has not figured out sleeping with out medical support at night yet.

I started the kids getting ready for bed early tonight. My hope was to get a few moments to myself. Well the little darlings thought otherwise.

The neat thing was Hannah babbled Mommy sweetly to me. She asked to go to the potty. She tried to get me to have a conversation with her. In the breaks in between Gabriel was doing all the same things. It's genetic or I'm a real soft touch. Most likely a little of both.

I finally used the stern mommy voice on both of them and said go to bed.

Hannah of course grabbed my arm and smothered it in kisses.

--Mom

Posted by parents at 11:09 PM | Permalink | Comments (0) | TrackBacks (0)

Posted by parents at 09:56 PM | Permalink | Comments (0) | TrackBacks (0)

Gabriel was invited to a birthday party out of our normal area. Where we live doesn't have a synagogue, so we go to one about 45 minutes away, and that is where Gabriel went to Sunday school. He had a really good friend there whose mother and I exchanged phone numbers. We never got around to getting together. Then she called and invited us to her son's birthday party.

The day was balmy and golden. Northwestern sunny days are rare, but when they do happen, they seem perfect. The air was warm with a cool breeze, and the trees made a shush sound in the air. The party was at a park. In the middle of this park was a huge grassy hill. The park attendants had stretched a plastic tarp down the hill and ran a hose over it. When the mother had mentioned slip-n-slide, I was thinking it would be the normal flat sprinkler sheet of yellow plastic perpendicular across a yard. This was something more.

I had brought a blanket for Hannah and me to sit on. So I settled us down and started her noon feed as I watched Gabriel run off with his friend and go stand in line for the humongous slip-n-slide. Hannah watched and clapped with enthusiasm. It took me about twenty minutes, but I realised something: people who stayed sitting up on the slide didn't get their faces and, importantly, their necks wet.

Hannah's neck still has a small hole in it, so water entry through there could still be dangerous. I realised Hannah, though, could do this without risk is she remained sitting. Unfortunately, I only brought back up clothes for the kids, not me. Then I considered Gabriel. He is six. He's pretty strong. His understanding of the importance of safety with Hannah has blossomed.

So when he wandered over I asked him, "Would you take Hannah down the slide?"

His eyes lit up. I think he craves big brother things to do with her. "Oh, yes, please can I?"

"Let's see." I looked at Hannah. "Hannah do you want to go down the wet slide." She smiled and clapped. I think there was a "Yeah!" thrown in there, too.

So I unhooked her g-tube. I grabbed a towel and a wash cloth and walked over to the line. I explained to Gabriel that he needed to keep her sitting up and hold onto her. I sat her between his legs and let go. I walked down the side as they made their progress. Hannah giggled and Gabriel laughed, "She likes it!"

They made it down in one piece, and Gabriel asked if they could do it again. So I asked Hannah and she screamed "Yeah!"

So up the hill we trudged again. They loved it; Hannah signed for more. But I was out of breath. She is around 36 pounds, and it was a big hill. The line on the top was pretty long too, so I copt out. Hannah was furious.

She did, however, also get to ride a merry-go-round and the swings.

It so sucks that I forgot our camera.

--Mom

PS. Gabriel wants to let the world know he threw up off the merry-go-round. A girl came and spun the merry-go-round really fast. He told her he was getting sick, and she didn't believe him and spun him faster. Hopefully, next time she will believe whoever tells her they are sick.

Posted by parents at 09:46 PM | Permalink | Comments (6) | TrackBacks (0)

Last week, I finally got around to hanging the Mezuzahs around the house. We've only been living here 6 years, and we bought the Mezuzahs 4 years ago. So last week, the day before we were interviewed by a reporter for a Jewish Newspaper, Robert and I decided it was time to hang them.

The Hebrew word Mezuzah means "doorpost". In our tradition, it is placed on the doorframes except the bathrooms. It is a casing that contains a scroll with the words from Deuteronomy 6:4-9 and Deuteronomy 11:13-21. They contain the  words of the main prayer of Judaism. It is called the Shema. We do this because of the biblical commandment to write the words of the Shema upon the doorposts of our houses.

It is a symbol that we are a Jewish home.

Robert showed Gabriel the general practice of people to touch the Mezuzah with their hand then bring their hands to their face and kiss them out of respect for the words of God. They do it every time they enter a Jewish home. It is a cool practice. Gabriel has taken it up. He has also started yelling at me because I don't do it.

I'm using it as an opportunity to teach him religious tolerance and Judaism. Wish me luck. I'm trying to split hairs on what is a practice and what is required by God. I'm also trying to teach him that respect and deeds are the most important thing:  not whether or not a person just does what everyone else is doing.

--Mom

Posted by parents at 09:30 PM | Permalink | Comments (0) | TrackBacks (0)

As has been previously mentioned on this blog, Gabriel was really sick all last week. There was a moment in the turmoil that actual made me laugh out loud.

I was arguing with Gabriel for the zillionth time, trying to get him to swallow anti-fever med. His nose was dripping snot (which was traumatising him). He stared at me dead pan. "There is an answer for all this misery. It is chocolate."

I nodded my head in agreement and got him a chocolate donut.

--Mom

Posted by parents at 10:30 AM | Permalink | Comments (2) | TrackBacks (0)

Hannah has really sensitive skin. Carpet makes her break out. Tissue makes big red splotches on her skin. I'm not kidding. We don't use wipes. I have about hundred wash cloths we wash over and over till the holes are bigger then the cloths. For awhile, she had a diaper rash problem we could not figure out. We did figure out that nystatin made it worse.

One day I had one of those deductive reasoning moments and realized that paper that has been bleached at any point in its existence was a problem (she broke out from white paper), so I moved Hannah to Seventh Generation Diapers. The diaper rash and redness disappeared.

It has been wonderful. Hannah has been growing and, well, the biggest size no longer fits her. I tried looking for older peoples incontinent pads that were not chlorine bleached, but could not find any information. So I started looking at cloth diapers. I already do a great deal of wash for her wash cloths, and she prefers to use the toilet when stooling.

There was an added problem with my odd aversions to certain fabrics. When I touch something that is velvet or similar in texture, I get that feeling that one gets when nails scratch a chalk board. It seems totally irrational and involuntary. but I've had it all my life according to my mother. That has been the problem with most diapers I've bought; I can't seem to hold onto them because they usually use flannel. (Ewww I just winced and shuddered)

So Hannah's grandfather, the great Zadie, has developed a diaper that is easy to use. It is smooth on one side and I don't have to touch the absorbent side.

Yay!, Zadie

--Mom

Posted by parents at 10:26 AM | Permalink | Comments (1) | TrackBacks (0)

We quietly had a big event in our house last Wednesday.

I think I made the supply person laugh all the way home with all the pictures I took

--Mom

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Gabriel's teacher arranged for a graduation ceremony for Kindergarten last week. The kids performed songs and did a play about Geography. I brought Hannah to see it. It is the first time something in the class has been scheduled and Hannah wasn't sick. She loved it and clapped emphatically at the ends of songs. She also chortled loudly at unappropiate moments. It was great.

The rest of the adults laughed as Gabriel's best friends interrogated me on the fact that they could still see the hole in her neck even though it was suppose to be closed. I love little kids. They just ask you straight out what is going on in their mind.

--Mom

Posted by parents at 10:54 PM | Permalink | Comments (0) | TrackBacks (0)

One of my distractions over the last few weeks has been the book InkHeart by Cornelia Funke. Robert and I got MP3 players that are compatible with Audible.com. It is a site for downloading books read outloud.

When the main characters in this story read out loud, things from the book they are reading come out. If the character is reading the poem Ode to the Nightingale   by Wordsworth, by the end of reading, there is a nightingale flying around the room.

So I listened to the beautifully descriptive book read out loud into my mind. This is funny listening to a book about things coming to life when read out loud, while listening to it read out loud.

The characters were fun and scary. Dialogue in this book felt real. The scenery it conjured in my mind was rich and consuming. The reverent love of books for books sake theme was also comforting. The overall message of the import ants of family heartening.

It is nice to have an adventure story for a child that also involves a parent with them.

I can't wait till I can share this story with Gabriel and Hannah.

I am in anxious anticipation of what Hollywood has done this to this story.

--Mom

Posted by parents at 09:20 PM | Permalink | Comments (1) | TrackBacks (0)

Posted by parents at 10:25 PM | Permalink | Comments (1) | TrackBacks (0)

Today, Robert, the kids, and I decided to go on an outing. Robert needed to do an exchange at our new Best Buy store. Just getting out sounded fun to me.

So we went to do our errand; then go to Red Robin for lunch. Red Robin was busy today due to the holiday. Seven teenage girls, obviously together, were taking up two booths worth in the waiting room. Their hair was all perfect. Their clothes matched their cell phones. Their cell phones weren't stashed away in a purse or pocket; they were clutched like Gollum's Precious from the Hobbit.

Gabriel paced the lobby. He tried to climb the five-foot replica of the Statue of Liberty. He was sure the plaque she held was a book that could be opened: an idea he got from Schoolhouse Rock. He asked me if I could open it.

Meanwhile, Hannah was protesting. She was hungry. So Robert whipped out Hannah's feeding tube and syringe. I watched the teenagers' eyes widen, and several shielded their eyes. This amused me. I bent down and said to Robert, "You won't believe the responses those girls are giving right now."

He chuckled. He joked we should ask them if they had a BIC pen to reinsert a trach for Hannah. He soon came up with other crisises, a little more typical to our life, but that would probably shock them just the same.

Personally, I would love to think that Hannah, as she gets older, will go up to a person like that  and say, "Oh, you still eat with your mouth? How barbaric!"

--Mom

Posted by parents at 04:05 PM | Permalink | Comments (1) | TrackBacks (0)

I took Hannah's post-hospital stay prescription to our local pharmacy. Before I left it with the pharmacist, I had them make sure they carried the medication and that they had the item in stock. That all checked out, so I asked for the prescription to be ready at noon the following day. (Before I went, Robert had checked on our insurance coverage.)

The next day I went to pick it up at 1:00 pm. The gentleman who was new to this pharmacy looked at me and said, "You can't refill this till June 22."

I gave him a puzzled look. Gabriel started pacing. "What do you mean?" I asked.

"You insurance won't refill this till next month."

"What do you mean refill.  I just dropped this prescription off yesterday?"

He shrugged.

"This is not a refill. My daughter just got out of the hospital yesterday. I just dropped off the prescription.  It hasn't been filled anywhere else."

After a lot of hemming and haww-ing, I got them to agree to call the insurance company, and since I had other errands to do, I said I would contact them again at 3:00 PM.

At 3:00, nothing had changed. This is the medicine to help with her stomach recovery by the way. So I went home and started calling the insurance company. Four phone calls later, I find out it has been approved, but the pharmacy just kept putting the request through which confused the insurance computer with it's multiple requests.

There went another couple hours of my life I'll never get back.

-Mom

--Mom

Posted by Dad at 09:39 PM | Permalink | Comments (0) | TrackBacks (0)

The other night, Gabriel came into our room complaining of a bad dream. It was my first night back from the hospital, so I wasn't going to share my bed with a kicking six year old.

"Let's go cuddle on the couch." I said softly.

He looked at me and said, "OK"

So we went to the couch in the family room and settled down. He had to make several trips to his room to bring blankets. Then he proceeded to turtle under the blanket and poke me with his knees and elbows.

I realised there would be no wind-down this way. So I broke the cardinal parent bedtime rule which is don't make sleep interruption fun. I grabbed a chapter book to read the next chapter. It was an Avatar book. Which is a story about a world with people called "benders" who can supernaturally control elements such as air, fire, earth and water.

Gabriel listened as he kicked the shelf behind the couch where he lost the TV remote and had to go rescue it.

I finished the chapter and started discussing benders with him. We made some of are own up that got us both laughing.

Caffeine Bender: a person who would create waves of coffee to fight off sleep benders.

Video Game Benders: A person who could combine and win video games.

Word Benders: a person who could make wonderful stories and songs.

Baa Baa Benders: A person who can control sheep (real useful in a battle)

Snot bender: A person who could slime their enemies with balls of snot.

It digressed from there. I finally sent him to bed sure that the nightmare thoughts had been bended away. I guess I was a Nightmare Bender.

-Mom

Posted by Dad at 09:32 PM | Permalink | Comments (1) | TrackBacks (0)

I find common social graces amusing some times. While rushing Hannah to the hospital this Monday, I called the nursing agency.

"Hello. Thank you for calling Childrens Nursing company. This is B. How may I help you?"

"Ahh, Hi B, this is Janette, Hannah's mother."

"Oh, hi, how are you doing?"

This is the funny part.

"I'm fine." I always pausing as my internal dialog laughs at me. No, I'm not fine, I'm rushing Hannah to the hospital again. After the pause, I proceed. "I'm calling to let you know we have detected blood in Hannah's stomach and are taking her to the emergency room. I'm thinking will be spending the night, but I'm not sure. Could you let S. know so she can inform G. and let whoever is on call know that I will be calling when I know more."

As our van clicks over the freeway bumps, I hear the pause on the other end. I wonder what is going through B's mind. She is the new director and new to the medically fragile world. I had just said I was fine. And then I proceeded to tell her how un-fine things were at the moment.

But my technical mind (from being raised by an engineer) is in the driver's seat of my mouth, and it knows I'm fine, Hannah, on the other hand: well, that is a whole other bucket of thoughts.

--Mom

Posted by Dad at 08:02 PM | Permalink | Comments (0) | TrackBacks (0)

I just put Hannah's pulse oximeter on her foot. She is sleeping and her oxygen level is at 100 percent and her heart rate is down to 97. This tells me she is sleeping deeply and easily. I've been realising that I have been trusting Hannah's body to breath for a while now. This is a big step for me.

I remember going through the same thing with Gabriel as a baby. It wasn't till he was over a year old that I trusted his body to breathe for him and could let him sleep alone.

With this realisation comes a relief of pressure in my system. Parts of my body that haven't relaxed in four years are unwinding. I find myself being overwhelmed in moments of giddy sleepiness.

Of course as I been typing this the pulse oximeter keeps going off. It is having a hard time reading her heart rate. LOL

Mom

Posted by parents at 09:55 PM | Permalink | Comments (1) | TrackBacks (0)

This Saturday, Robert and I attended the All-Born In Conference.  Its emphasis was working with schools to include all children in all classrooms.

I must admit that I was giddy that Robert and I got a whole day to go out alone together.  We kept discussing our game plan to ensure we both kept focused on attending the conference (and not sneaking out to our favorite book store).

The beginning keynote speakers, Norman Kunc and Emma Van der Klift, were hilarious,  The other thing I liked about them is that one of the main themes of his Norm's speech, Being Realistic Isn't Realistic, was about how most people are hampered by perception.  He reminded us all to aspire to think like Houdini.  He was constantly pushing to do things instead of focusing on why he couldn't.

It was great to hear someone talking about what Robert and I talk about everyday.  We usually approach problems from the perspective of:  we would like to do this.  How will we make this happen?  

For example, I want Hannah to be able to ride bikes with the other kids on the block.  There is a 600.00 bike we are looking into.  In the meantime, I take her out in her wheelchair and push her around.  I've also modifying a low-rider trike with seat belts, feet straps and a pole to push her in it.  Somehow, someway, we'll all ride bikes together.  We just have to be creative and figure out a way to make it happen.

 -- Mom

Posted by Dad at 08:04 PM | Permalink | Comments (1) | TrackBacks (0)