Pieces of the Reeses

Our Family of Four

2012-02-10T20:13:00.006-05:00

An email from Grandpa

2012-02-10T20:08:00.002-05:00

So my Dad sent along this email with some photos of our new girl Miranda the other day. I thought it was quite funny. Not sure the nickname will stick.

Parents spend a lot of time and energy deciding on names for our children, yet for whatever reason we tend to pick up nicknames as life goes by.

My mother named me Robert, but I have always answered to and become known as Bob, along with several less flattering nicknames.

I always knew when I was in trouble because instead of Bob I became Robbertt......

I believe that when Dolores was a child some of her sisters could not pronounce her name so she became Dolo.

My sister Marilyn has become Aunt Mar.

We also have Aunts Char, Bern and Re.

While growing up our children were given several nicknames, when Dolores went to yell at or to one of the girls it usually came out JaDan.

Frank was referred to as The Boy, as in what did The Boy do now or where is The Boy now, until his preference for pasta changed that to Franko.

Frank's wife Jen is known as Peanut to her friends.

Danielle became Danno.

As they went off to school friends pinned several other nicknames on them, most ended up being just Lupo, also known on email as Loopoh.

Dolores and I sometimes just refer to them as Numbers 1,2 or 3.

Several nieces & nephews also have nicknames, Donnie is usually just known as DP.

While even as she has become a young lady and grown in size we still have Little Charlotte aka Chuckie.

Mathew is Mattie, Kevin is Kev and there are several others.

Grandchildren have nicknames.

We have Mattie, Cailyn is Miss K or KK, sometimes Tasman will introduce himself as Thomas to strangers.

I know Jen and Curt spent a lot of time and energy in coming up with the lovely name Miranda ( do you understand your rights as they have been explained to you) Rose Reese,

and I have heard rumors of potential nicknames, Mira or Randy, but sometimes fate steps in.

Lets take a look at the child's birth date, no I'm not going to call her Groundhog.

As Danno points out on her blog Miranda was born on 2/2/2012.

As a csection birth the date and time was pretty well planned, not like her mother who decided to pop out a few weeks early, but was still kept waiting by the Doctor as several relatives sat at a baby shower waiting for the guest of honor, the Doctor was waiting for the Mets game to end before he delivered Jennifer.

Back to Miranda born on 2/2/2012 that's four deuce's or with deuce's wild five of a kind in poker.

Miranda may become a wild child somewhere down the line or a professional poker player, but for now I am going to start calling her Deuce.

Say hello to the Little Deuce when you meet her.

Attached is a picture of Grandma with Miss K and Little Deuce.

Miranda Rose Reese 02-02-12 -- 12:01 pm 8 lbs 1oz

2012-02-06T16:45:00.000-05:00

Big Sister, Little Sister

Cailyn Juliette and Miranda Rose

Daddy's Girl

Going Home

Less than 48 hours left as a family of 3

2012-01-31T19:48:00.003-05:00

BGR2 should make her arrival noon on Thursday 2-2-12/Groundhogs Day. So amazing to believe. Hoping and praying for healthy safe delivery and healthy safe baby. We'll post photos (and her name) here and on Facebook.

Nine More Days

2012-01-24T18:06:00.002-05:00

... until baby girl Reese two (BGR2) joins us. My c-section is scheduled for Thursday Feb. 2. Grandma will come in Feb. 1 and hopefully BGR2 will wait until the second to join us. I believe Aunt Danielle will be super stressed out if she doesn't wait until the 2nd :-).

Yesterday was my first day of maternity leave. With Cailyn I worked until the day before I went in to the hospital but this time I am tired. I am glad I wrapped up work early and am taking some time before BGR2 gets here. I am very lucky with work and won't return until the first week of May--15 weeks, almost 4 months off.

This week I'm tending to some much needed maintenance on many fronts: oil change in the van, pedicures for me, Otis and Elvis and haircuts for me and Miss K.

Today we had a semi-emergency come up as a wheel fell off Cailyn's wheelchair in the parking lot of therapy. Our new caretaker Katherine was with me so she took Cailyn out of the chair and carried her to the van, and I pushed it on 3 wheels the rest of the way. Curt will take a look and can hopefully fix it. If not I'll have to drive her to school and bring a stroller because she can't ride on the bus without her wheelchair--it serves as her car seat too.

So now meeting up with the repair guy will be added to my to do list along with 2 more doctors appointments this week, two therapy sessions for Cailyn and finishing up phone calls and making copies for insurance paperwork and reimbursements.

This weekend I'm hoping to have a big cooking session and make a few casseroles to freeze and eat after BGR2 is here. I doubt I will have much time afterwards. I picked out the recipes and made a shopping list so hopefully we'll get to the grocery store and I can cook, cook, cook on Sunday.

The only other news really is how bad Cailyn's seizures have been lately. Since about the beginning of December, we've increased her medicine twice and she's still having bad startle seizures and just some yucky episodes. This all effects her sleep and her schedule.

An example, she slept until 11 at school today, woke up to eat lunch and then get on the bus and came home. She did have a really good PT session this afternoon so hopefully this will get better soon. Her neurologist said we are probably going to have to talk about adding in a third medication again, but not sure which one. She's on Keppra and Depakote right now. We see him again Feb. 21.

I've been investigating adding coconut oil to her diet. I've seen a few posts by special needs Moms that it's helped their kids and honestly it can't hurt. She likes coconut, she's currently eating coconut yogurt almost daily, and it would add about 300 calories to her daily intake, which would help get some more meat on her bones. I'm in no way implying it will take the place of her meds but even if it helps a little it's worth trying.

On another medical front. I've talking with Cailyn's pediatrician and she's gotten everything in order so two weeks after BGR2 is born, we can get her blood and send it to TX to be tested and make sure she doesn't have the same genetic neurotransmitter protein anomaly as Cailyn. It's less than 1% chance that she does but I'd rather test her and be sure, rather than sit around and stare at her wondering if today is the day she'll have her first seizure. Our favorite ped, Dr. Carroll will be doing rounds at the hospital after BGR2 is born so it will be great to see a familiar face, who is very familiar with Cailyn's history.

Fingers crossed BGR2 is healthy, eats well and has NO SEIZURES. I want a very boring maternity leave with NO extra hospital stays.

WARNING: Have kleenex available

2012-01-10T16:26:00.001-05:00

She's far from doing this independent but she's willing to keep her feet on the ground which is huge.
My big girl is almost 4.

We've set the date

2012-01-06T04:35:00.002-05:00

Well we've set the date for my c-section. February 2, 2012 Baby Girl Reese Two (BGR2) will join us. 2-2-12 is a pretty cool birthday, also Groundhog's Day.

There's lots to get ready beforehand and I have to say I think both Curt and I have both jumped in to the nesting phase. We are having our HVAC airvents cleaned out today, the baby's room is almost all put together and then on Monday we have cleaning people coming to give the whole house a good once over. Much, much on the to do list but it is definitely motivating to have a deadline. Hopefully she decides to stick to the schedule and not come too early.

We are still debating names and are trying to narrow it down. When I found Cailyn in the baby name book I just knew that was her name, I think I'm second guessing myself too much this time.

11 Things I’ve Learned Since Becoming a Special-Needs Parent

2011-12-27T16:41:00.000-05:00

A very true post by another parent

11 Things I’ve Learned Since Becoming a Special-Needs Parent

Cortical Visual Impairment--THE Specialist

2011-12-20T08:50:00.003-05:00

So I haven't really pursued Cailyn's vision issues with everything else she goes through on a daily basis. But I decided it was time and recently contacted, who I thought was THE specialist in the country, Dr. Christine Roman. Ends up, she's THE specialist in the world. She's had patients come as far as Hong Kong to come see her for an evaluation. She's located in Pittsburgh.

They are currently making appointments for 9 months out but we got added to the waitlist, I'm hoping we'll get in late in the Spring after BGR2 comes.

(I found this on another families website but it's a good explanation of Cailyn's CVI)

WHAT IS CORTICAL VISUAL IMPAIRMENT?

Cortical Visual Impairment (CVI) is a temporary or permanent visual impairment caused by the disturbance of the posterior visual pathways and/or the occipital lobes of the brain. The degree of vision impairment can range from severe visual impairment to total blindness. The degree of neurological damage and visual impairment depends upon the time of onset, as well as the location and intensity of the insult. Children born with impaired sight do not know how they are supposed to see the world. Those who develop vision problems as young children may not have the language to communicate information that could help detect these problems. It is a condition that indicates that the visual systems of the brain do not consistently understand or interpret what the eyes see. The presence of CVI is not an indicator of the child's cognitive ability. Early professional intervention can make a major difference in your child’s development.

And with children with Infantile Spasms, the neurological state can fluctuate based on seizure control.

VISION IS MORE THAN 20/20 EYE SIGHT

Having 20/20 eye sight is not necessarily perfect vision. The standard eye chart used in the offices of doctors and school nurses measures how well a child can recognize a black letter from a distance of twenty feet with one eye. But this test detects less than 20% of children’s vision problems. It does not evaluate how well a child performs on reading distance, eye-hand coordination, tracking skills (following movement), eye teaming skills (how well both eyes work together), and visual processing skills. Vision is the ability to take in, process and understand visual information. It includes eye sight, eye movement skills, eye teaming, focusing, depth perception, color vision, peripheral vision, visual perception and processing, and the ability to integrate all of this information with our other senses.

CAUSE

The major causes of CVI are asphyxia, perinatal hypoxia ischemia ("hypoxia": a lack of sufficient oxygen in the body cells of blood; "ischemia": not enough blood supply to the brain), developmental brain defects, head injury, hydrocephalus, and infections of the central nervous system, such as meningitis and encephalitis.

CHARACTERISTICS

Initially, children with CVI appear blind. However, vision tends to improve. Therefore, Cortical Visual Impairment is a more appropriate term than Cortical Blindness. A great number of neurological disorders can cause CVI, and CVI often coexists with ocular visual loss so the child should be seen by both a pediatric neurologist and a pediatric ophthalmologist. The diagnosis of Cortical Visual Impairment is a difficult diagnosis to make. It is diagnosed when a child has poor or no visual response and yet has normal pupillary reactions and a normal eye examination. The child's eye movements are most often normal. The visual functioning will be variable. The result of an MRI (Magnetic Resonance Imaging) in combination with an evaluation of how the child is functioning visually provide the basis for diagnosis.

BEHAVIORAL/VISUAL CHARACTERISTICS

Children with CVI have different abilities and needs. The presence of and type of additional handicaps vary. Some children have good language skills and others do not. Spatial confusion is common in children with CVI because of the closeness of the occipital and pariental lobes of the brain. Habilitation should be carefully planned. A full evaluation by a number of professionals is essential. The evaluation team could include: teachers (of the visually impaired or severely handicapped), Physical Therapists (PT's), Occupational Therapists (OT's), Speech Therapists, and Orientation and Mobility Specialists.

Common characteristics of visual function demonstrated by children with CVI

1.Vision appears to be variable: sometimes on, sometimes off; changing minute by minute, day by day.

2.Many children with CVI may be able to use their peripheral vision more effectively than their central vision.

3.One third of children with CVI are photophobic, others are compulsive light gazers.

4.Color vision is generally preserved in children with CVI (color perception is represented bilaterally in the brain, and is less susceptible to complete elimination).

5.The vision of children with CVI has been described much like looking through a piece of Swiss cheese.

6.Children may exhibit poor depth perception, influencing their ability to reach for a target.

7.Vision may be better when either the visual target or the child is moving.

The behaviors of children with CVI reflect their adaptive response to the characteristics of their condition

8.Children with CVI may experience a "crowding phenomenon" when looking at a picture: difficulty differentiating between background and foreground visual information.

9.Close viewing is common, to magnify the object or to reduce crowding.

10.Rapid horizontal head shaking or eye pressing is not common among children with CVI.

11.Overstimulation can result in fading behavior by the child, or in short visual attention span.

12.The ability of children with CVI to navigate through cluttered environments without bumping into anything could be attributed to "blindsight", a brain stem visual system.

13.Children are often able to see better when told what to look for ahead of time.

14.Children with CVI may use their peripheral vision when presented with a visual stimulus, appearing as if they are looking away from the target.

15. Some children look at an object momentarily and turn away as they reach for it.

MODIFICATION OF THE CLASSROOM FOR THE CHILD WITH VISION PROBLEMS

•Position the child optimally in classroom. To reduce glare, for example, have the child’s back towards the window.
•Provide adequate lighting, preferably full spectrum, fluorescent or incandescent lighting.
•Use a slant desk to provide easier head and eye posture. Monitor the posture of the child who is writing.
•Use bold line paper and felt tip and #1 pencil for writing.
•Bold chalk on a blackboard is easier to see than a dry erase marker on a white board
•Perform most reading and writing activities during the morning.
•Allow the child to do near work for fifteen minute intervals, taking breaks between.
•Be sure the child is wearing glasses when recommended.
•Reduce the amount of visual distraction in the room. Try not to overdecorate the chalkboard.
•Double spaced sentences are easier to read. Try to be consistent with the type or font style used.
•Encourage visual thinking.

Almost December already

2011-11-29T20:25:00.002-05:00

I can't believe November is almost over. We are about 8 weeks away from meeting BGR2. Her room just needs some touch ups on the paint and the trim and floorboards painted and it's ready. Still need to pick up a crib.

Here's Cailyn last week on the tricycle at PT.

The R Word

2011-11-14T12:40:00.002-05:00

'Glee' star tapped to join Obama's committee

Good to hear.

Help spread the word to end the word.

BGR2--Week 27 (profile shot)

2011-11-11T13:08:00.003-05:00

Yet unnamed Baby Girl Reese is now 27 weeks and doing well. She's weighing in at 2 lbs 11 oz.

Because Cailyn is Cailyn--a unique little girl

2011-11-11T07:57:00.006-05:00

In the recovery room after her most recent endoscopy--my beautiful lady.

Because Cailyn is Cailyn, and no diagnosis or cure can be easy for her.

Last Friday she had her 2nd endoscopy to check her esophagus and see if the white blood cells from the eosinophilic esophagitis had dissipated with her very strict elimination diet, which had us eliminate 23 different food items out of her diet due to allergy or sensitivity.

here's the background

In July Cailyn had an endoscopy and impedance test which I requested since she's always had reflux. I wanted to see if her esophagus was getting damaged and if she was on enough meds for the reflux. So ends up her reflux was ok but she was diagnosed with eosinophilic esophagitis. This was very upsetting and we engaged in very involved patch testing for food allergies and found 23 items she reacted to.

So the plan was to eliminate those 23 things from her diet for 3 months and then do another endoscopy to see if the white blood cells/eosinophils had cleared up. Yesterday we met with the EOE team (GI, Allergist, Dietitian) to find out the results. Ends up the elimination diet did nothing for Cailyn and there was no change. This was frustrating since we had cut so much out of her diet.

So we were given a few options and the one I think we'd like to try is to do is a steroid (Budesonide and the dose would be 1/2 tsp compounded at 1mg/5ml twice a day and taken orally) taken for 3 months with a follow up endoscopy at that time. Usually this steroid is inhaled for asthma but it has been shown to fix EOE as well. Once she's on the steroid we can go back to eating anything she was eating before except milk and egg since we have seen very severe reactions to both of those.

She truly is my 1% baby. 1% chance she'll have a specific reaction to a med, 1% chance of a diagnosis etc. Not sure if it's a 1% chance the elimination diet would not work, but I wouldn't be surprised.

Dorothy

2011-11-08T17:58:00.006-05:00

So Grandma really got into Halloween this year and now she's set a precedent. She made Cailyn a Dorothy costume and her cousin Mattie a Belle costume.

Here's Cailyn at her school parade and party.

Dorothy, her 3 Totos and the Chefs.

I've already told Grandma to get started on Strawberry Shortcake and Apple Dumpling for Cailyn and little sister next year. :-)

Snow in October

2011-10-29T08:00:00.000-04:00

A big bit of craziness in October. I blame Aunt Danielle moving to VA. She brought the weirdness--earthquake, hurricane, flooding and now snow in October. The dogs are very confused. Otis is trying to lick up the sleet and Elvis doesn't want to go out and pee.

School Pictures Year 2

2011-10-20T17:19:00.004-04:00

So again, not smiling but she's awake so a step up from the class picture last year.

My big girls

2011-10-19T12:24:00.002-04:00

So Cailyn's always been at the top of the charts for height and now it's looking like Baby Girl Two will as well. Right now she's measuring in the 93rd percentile and weighing in at 1lb 11oz.

Went back to the docs today, things are looking good on the sonograms and her heart rate is good. I've been beyond exhausted since Saturday. Seems a little better today.

Night Moves

2011-09-29T06:20:00.001-04:00

Dear baby girl,
All though I do enjoy feeling you move all around, the 12:30 am dance party in mommy's tummy is a bit much. I already get up multiple times to pee and have to get up at 5 to get your sister ready for school. Please keep this in mind tonight. Thanks

Another BGR aka Burger

2011-09-22T14:27:00.005-04:00

Well we had our latest sonogram today and in January another BGR will join us, Baby Girl Reese. Cailyn's going to have a little sister.

We are at a loss with names. We had a boy name and now we are back to the drawing board.

The halfway point

2011-09-15T11:35:00.002-04:00

Wow today is the halfway point in my pregnancy. It's going fast. Things have been going well so far, no to minimal weight gain by Mommy but definitely had to retire the regular pants for the super stretchy maternity pants---love them. Even some of my sweats are a little uncomfortable. Next Thursday is my next sonogram and more than likely we'll be able to find out the sex of the baby.

Caroline's Cart--a great idea for Cailyn

2011-09-07T09:18:00.003-04:00

Look at this great new shopping cart available for kids like Cailyn. I'm going to make up a flyer and bring it with me to grocery stores and give them to the store managers. Hopefully we'll have a few in the area soon.

One thing you can do to help "LIKE" Caroline's Cart on FB.

What a morning

2011-09-02T08:47:00.002-04:00

Cailyn's bus didn't show up at all so I ended up driving her. I called and there was a sub. When I got to school the twins who ride on the bus with her were already at school and the teacher said the sub driver said Cailyn wasn't listed on the route. A little concerned they aren't going to bring her home. I told the teacher that her address is on her bookbag and wheelchair so please point that out to the driver.

One good thing is I got to see the new chair they are using for Cailyn in school. She was in a chair that was on the floor. Now all the kids in the class are in higher chairs so they found one for her too. She looks good and comfy in it.

Food Allergies--Elimination Diet Begins

2011-09-01T20:49:00.003-04:00

Ok so for the next 3 months we will do an elimination diet for Cailyn and try to let her esophagus heal by removing all foods she may be allergic or sensitive too. The list is extensive.

The Red List is No-No and will be eliminated for at least 3 months

1. Milk

2. Egg

3. Soy

4. Wheat

5. Tomato

6. Peaches

7. Zucchini

8. Green Pepper

9. Honey Dew

10. Cantaloupe

11. Chickpeas

12. Yellow Squash

13. Onion

14. Spinach

15. Beef

16. Pork

17. Pineapple

18. Raspberry

19. Butternut Squash

20. Sweet Potato

21. Turkey

22. White Potato

23. Red Beans (these last two are being reviewed again and may be able to go on the green list)

24. Black Beans

The Green List is OK

1. Chicken

2. Green Beans

3. Carrots

4. Corn

5. Peas

6. Pears

7. Coconut

8. Apple

9. Prunes

10. Oats

11. Rice

12. Barley

13. Orange

14. Avocado

15. Almond Milk

16. Jello

17. Banana

18. Quinoa

19. Lentil

20. Grapefruit

21. Apricot

22. Blackberry

23. Tuna

24. Peanut

25. Red Pepper

26. Pumpkin

27. Grapes

28. Strawberry

29. Lemon

30. Papaya

31. Blueberry

32. Broccoli

33. Yellow squash

34. Garlic

35. Salmon

36. Watermelon

37. Lime

38. Plum

39. Flaxseed

40. Mango

My Big Girl---1st day of the second year of preschool

2011-08-29T08:06:00.003-04:00

Much less stressful an event than this time last year. Luckily Cailyn has the same bus driver and aide as well as teacher and aides. They all know her and we are comfortable with them.

Before the bus came

When the bus showed up she woke up fortunately

Allergy Update--Part Two

2011-08-26T10:50:00.000-04:00

The test is still going on but here’s the latest possible/probable items Cailyn is allergic or sensitive to and we may have to cut out of her diet:
1. Milk
2. Egg
3. Soy
4. Wheat
5. Tomato
6. Peaches
7. Garlic
8. Salmon
9. Zucchini
10. Green Pepper
11. Honey Dew
12. Cantaloupe
13. Mango
14. Chickpeas
15. Yellow Squash
16. Flaxseed
17. Onion
18. Spinach
19. Lime
20. Plum
21. Beef
22. Pork
23. Pineapple
24. Watermelon
25. Raspberry
26. Butternut Squash
27. Sweet Potato
28. Turkey
29. White Potato
The allergist will take a look at all the results and then we’ll meet with the EOE team (GI, Allergist and Nutritionist) at clinic and figure out what we should cut out of Cailyn’s diet before redoing her endoscopy in three months.

Earthquake?

2011-08-24T07:15:00.003-04:00

Well yesterday was really weird, everyone knows we had an Earthquake at this point but it was really odd.

We were at the Hospital preparing Cailyn's next food allergy test, she has some stinky patches on now with garlic, tuna and salmon, and people were really freaked out.

I, with my apparent pregnant spidey senses felt it first, I felt dizzy and was like "oh crap is that my blood sugar?", then a little bit later the dizziness came back and others felt it and someone said Earthquake.

We were all a little stunned, some people got in doorways, I kinda leaned over Cailyn in her wheelchair. All of a sudden I was really concerned that it wasn't an Earthquake, but our building was falling down. Someone in the office got through on the phone to her husband in another town and he said Earthquake too, so I was ok.

The phones were overloaded and I could get through to people with text, email and old reliable FB.

I don't think Curt would have known it was an Earthquake, except for the dogs freaking out.

Interesting way to welcome my sister to VA. You can read her blog entry on the day's events.

A house full of love

2011-08-21T18:11:00.003-04:00

I came back from the store a few weeks ago to find these 4 in my bed.

Our recent vacation

2011-08-19T12:35:00.004-04:00

I'll post more photos later of our trip to the Outer Banks. It was very nice, great weather and Curt did a very minimal amount of work.

My parents met us for part of the week. Some pics of K and Grandma at the Beach.

2011

2009

Food Allergies Suck

2011-08-16T09:44:00.003-04:00

Much to our dismay, 9 more foods have been identified as possible allergens for Miss Cailyn... and some of these are ones she's particularly fond of.

Soy
Wheat
Beef
Pork
Pineapple
Watermelon
Raspberry
Butternut Squash
Sweet Potato

We will meet with the GI and Allergist in September and review all this but I want to do more testing of other foods so we can cobble together a well-rounded diet for the girl in trying to clear up her EOE.

Snuggle Buddies--Happy Birthday Elvis--He's 6 today

2011-08-15T17:21:00.001-04:00

Food Allergy Testing... more torture for Cailyn

2011-08-12T21:50:00.003-04:00

So Cailyn has to wear rotten food blobs on her back for 48 hours to try and decipher what she's allergic too. Mommy is tired. We weren't able to test everything she eats, there wasn't enough room on her back so we'll be doing this again at some point.

It was going fine until she puked this afternoon. The last two times she's vomited everything has been with yogurt and jello together so we will keep those separate for now.

After they determine what she's allergic too we'll have to do an elimination diet and cut out anything she reacted to for 3 months, then redo her endoscopy.

Here's a picture of her poor little back. Curt pointed out, what if she's allergic to the sharpie marker they wrote all over her with.

Another diagnosis for Cailyn

2011-08-08T15:25:00.000-04:00

It's great to get answers but this one was hard to hear. Cailyn's endoscopy last month revealed she has a disease called EOE-esophillic esophagitis.

In eosinophilic esophagitis, a type of white blood cell (eosinophil) builds up in the tube
that connects your mouth to your stomach (esophagus) as a reaction to foods, allergens or
acid reflux. When that happens, the eosinophils can inflame or injure the esophageal tissue.

So treatment now is extended allergy testing and then a strict elimination diet making sure she has no exposure to any foods she's allergic or sensitive too.

Usually kids don't want to eat when they have this disease but that hasn't been NE of Cailyn's issues. It could also be why she doesn't want to drink though.

Lots of more Dr appts with allergist and GI doc and endoscopies every 2-3 months.

Cailyn's got a big announcement

2011-07-29T17:06:00.004-04:00

The end of January she'll have a new brother or sister.

A trip to the Hamptons

2011-07-26T07:56:00.000-04:00

Cailyn, Sarah (Cailyn's caretaker) and I took a trip up to NY to visit with a dear friend and her family. We stayed a few days at her family's beach house in the Hamptons. It was a really great trip. A little too much sunburn.

Despite the face in this picture Cailyn really does like Sarah.

Today's Biology Lesson

2011-07-26T07:36:00.000-04:00

So we were contacted by Cailyn's geneticist a few weeks ago that they've finally come up with answers.

We've been testing Cailyn for various genetic and chromosomal issues for almost three years now. First at Johns Hopkins and then at the Kennedy Krieger Institute, also in Baltimore.

They've tested blood, blood sugars, proteins, spinal fluid, MRIs etc. So it ends up Cailyn has an anomaly in a neurotransmitter protein called STXBP1. It has only been discovered in the past year so it's super new science. Ends up Cailyn is the first case of STXBP1 at Kennedy Krieger.

It will not change anything in how we treat her. Since it's gene stuff it's not "fixable". The two biggest things with this protein are intractable seizures and developmental delays. Nothing new on that end, these were both things we already knew. The one new thing we found out is that this is NOT inherited so if we have other children there is only a 1 to 6% chance they would have the same anomaly, so 94% chance or greater that this would NOT occur again.

So no new steps for now. We are still supposed to stick with her neurologist for seizure control and all her therapies to improve her strength and skills.

Summer Update

2011-07-13T22:24:00.003-04:00

Well my sabbatical has been nice but I'm finding it's super busy and going quick. We went to the 4th of July parade in Leesburg, I did another lecture for nursing students, then we went and visited family in PA last weekend. Home a few days, Cailyn therapy appointments and then heading out again.

Next Wednesday Cailyn has her endoscopy and impediance test to look at her esophagus and make sure it's not damaged from her reflux, then also test how bad her reflux is and see if she's on enough medicine to control it.

More updates later and hopefully some pictures too.

Summer Vacation

2011-06-30T15:16:00.002-04:00

Cailyn is definitely enjoying her summer vacation. She's getting in some good naps for sure.

She's been in her stander and got to ride in her flying saucer a few times, which she really likes. The past two days the weather has been nice and we can go out to the swingset in the day time and not be tortured by the gnats in the evening.

Today she got measured for her tricycle so hopefully that will be approved by all the insurance folks and make it here soon.

We've been testing out more foods with her and so far she's been ok with Coconut Milk and Almond Milk. Next to test are peanut and cashew butter. It's still weird to me that she's allergic to milk and eggs but ok with nuts.

My summer vacation starts tomorrow. I am on my 6-week sabbatical July 4-August 12 and I am very excited. Hoping to get things done around the house and take Cailyn out and about, especially to the pool. We also have 3 roadtrips planned, 1 to the mountains and 2 to the beach. Oh it will be very hard to go back to work.

More updates and photos to come. Have a good 4th of July.

More torture for Cailyn

2011-06-22T15:46:00.002-04:00

She's back in the stander this week. The PT at school suggested 2-45 minute sessions a day. She's been a trooper.

Allergies Update

2011-06-20T13:19:00.001-04:00

Allergist update: Cailyn's still allergic to milk and egg, so we retest in a year and see if she outgrows it. But she is not allergic to tree nuts.

We tested almond, cashew, coconut and peanut today so we have some new things we can start trying out in her diet.

We will also attempt avocado again and branch out trying more fish, that swim, not shellfish, I'm too scared of her eating shrimp etc.

Cailyn's Flying Saucer

2011-06-19T18:45:00.002-04:00

Thanks for the suggestion Grandma and Grandpa

Hair Today

2011-06-17T17:55:00.003-04:00

Gone Today...
I donated my hair to Locks of Love to make wigs for people with Cancer.
AFTER

Poor Cailyn

2011-06-17T12:44:00.002-04:00

Now that's school's out she still doesn't get a break. This weekend we are starting her anti-constipation protocol which starts with a 3-day cleanse process. She seems amazed and confused. Constipation is supposedly a common problem for little ones with Cerebral Palsy and low muscle tone.

Cailyn's most recent EEG

2011-06-15T09:18:00.002-04:00

We haven't had an EEG lately so I wanted to post these pics of her as a big girl with the EEG rather than a baby.

It's been a year and a half since her last EEG and it was cute because the technician remembered her and said she's gotten SOOOOO big.

A busy June so far

2011-06-14T08:23:00.002-04:00

It's been a busy month so far, only 3 weeks until my 6-week sabbatical, including trips to the beach, pools and lots of fun time with my girl.

Here's a recap:

Cailyn finished up Aquatic Therapy and we're holding off for the summer starting a new session.
Cailyn got new braces for her hands and legs--resting hand splints to sleep in and then knee immobilizers to use in the stander for more stability. The hand splints are way too big and they are going to need to order a smaller size.
Cailyn saw a new Gastroenterologist that seems really good. We are going to schedule some tests to check on her reflux and we now have a plan for her constipation management.
Cailyn got retested for allergies and no end in site for the girl. She's still allergic to both milk and eggs and the levels have actually gone up this year. We have an appointment with the doctor on the 20th to get a better understanding. I'm also going to ask about nuts and the possibility of adding peanut butter to her smoothies.
Yesterday Cailyn had an EEG to retest her seizures. She still has an abnormal EEG, with lots of clinical seizures going on pretty constantly.

Aunt Danielle is visiting for an extended period before she heads out on another summer trip to Europe.

The R-Word

2011-06-08T11:05:00.002-04:00

I don't know if you've seen this add yet but the message is powerful. Please take it with you and keep our girl in mind when you choose to use inappropriate words.

Apparently Elvis wanted an expensive pedicure too

2011-05-09T10:54:00.003-04:00

So I spent time at the Vet AGAIN for a toe injury, this time it was Elvis. His was a little more severe. On our walk this morning it seems that Otis dragged Elvis a little, scraped up his front toe knuckles and split and graded down one of his nails. I didn't realize it at the time, but then I saw blood streaks on the kitchen floor and had to figure out who was hurt. I thought someone had just scraped one of their pads.

Elvis' Boo-Boo

To recap here's Otis' Boo-Boo

A new calling

2011-05-07T22:04:00.001-04:00

So for a while now I've been trying to find my happy and find some rewarding work. I decided a few months ago that my happy is when I'm helping other families with special needs kids, other families like mine.

So I've taken on a part time job doing home visits and case management for kids with Virginia Medicaid. I've helped 5 kids so far and have a few new ones I'll meet with in the next few weeks. I'm planning on working one weeknight per week and then two weekends a month. I'm still working full time at AARP but this is turning out to be my passion.

I'm trying to get more involved in the community as well.

*I sat in on a meeting a few weeks ago with some of the staff from our local Emergency Room and some other Moms to help make the hospital more receptive to special needs kids. The big issue is that the three times Cailyn went to that emergency room they put her in an ambulance and shipped her somewhere else. She hasn't needed to go to the ER for 2 years now (knock on wood) but if she had to go I would just drive her to the other ER a little further away to save the ambulance drive.

*I contacted a local woman who has a Foundation that helps Families with Special Needs kids and also loans equipment. We're going to a tea party for the Foundation next Saturday and we are going to check out the 2 loaner tricycles she has on site to see if one will fit Miss K. This woman will be a great contact for me and my future.

*Today I got an invite from a friend who is a nurse and professor at Shenandoah University. She is teaching a pediatrics class this summer and has asked me to come in and speak to her nursing students. I'm honored and very excited about this. I think I'll probably give a brief history on Cailyn, talk about how to treat special kids and their parents and answer any questions they have.

Ok now I have something new I have to start fighting insurance for..

2011-05-03T15:31:00.003-04:00

Getting Cailyn her own bike.

Clemyjontri, Then (2009) and Now (2011)

2011-05-02T21:48:00.004-04:00

So we recently took Cailyn to her big yellow swings at Clemyjontri Park, which has a handicapped accessible playground. I have more photos to post but here's a quick video clip.

And here is a picture of July 2009 in the same swing, it's amazing how big she's getting.

Lady Cailyn Ticky Reeseton of Sterlington

2011-04-29T10:59:00.003-04:00

So we had fun the other day with finding out our Royal Names online and Lady Cailyn apparently had Royal Wedding Fever. She woke me up at 4:50 am this morning to make sure we didn't miss it. Then she proceeded to fall asleep a little after 6 and missed Kate's pretty dress. Hopefully she'll be awake for all of school again.

Not much planned for the weekend. Meeting some friends for lunch tomorrow, laundry etc. I really want to go to the movies soon, I haven't been in a while but not sure what I'll go see, maybe Water for Elephants.

Spring Break's Over

2011-04-26T09:49:00.003-04:00

Well Spring Break is over and I'm back to getting up at 5:30am to get Cailyn ready for school. Her sleeping has been better and yesterday she only slept until 9 at school. Much better than her 11 am days.

We had a follow-up with Dr. Im yesterday. He feels she's more attentive and aware than even 3 months ago and wants to do a baseline x-ray on her hips to keep an eye on their development.

Along with all her regularly schedule therapy, upcoming appointments include: a followup with ophthalmology, genetics and neurology in May and then allergist, allergy testing and new GI doc in June. Fingers crossed she's over her milk and/or egg allergy. It would be great to add these items into her diet.

I'm not going nuts over the royal wedding. I will probably check out the coverage to see her dress, I do remember watching Princess Diana walk down the aisle on TV. So here's a fun little game.
Find your own Royal Name
Mine and Cailyn's royal names:
Duchess Jennifer Lulu Reeseton of Sterlington
Lady Cailyn Ticky Reeseton of Sterlington

The new king bed is ok. It's a bit too firm for my taste but the room is nice and not having 2 dogs on top of me is good too.

After Cailyn has left for school the past 2 days I've taken the dogs for a 2- mile walk. I started out the school year really well and did this walk for about the first 2 weeks of school. Then we got sick, it got cold and dark and I abandoned the morning walks.

Yesterday I thought I was going to have to carry at least one of the boys and my bet was on Otis, who is now topping out at 35 pounds and very strong, he's firm and very much muscle-y. Elvis has lost some weight so I think he's around 20. Elvis holds his own but sometimes Otis powers over him.

New bed--woo hoo!

2011-04-22T21:22:00.003-04:00

We broke down and used our tax return to upgrade to a king bed. Oh so nice. I took a nap today to test it out. Right now I'm in this big bed and Elvis is smushed up against me despite there being tons of room. Hoping this is a big step toward curing my insomnia. Sleep tight. Sweet dreams.

An expensive pedicure

2011-04-20T17:47:00.005-04:00

So yesterday I noticed Otis had a toenail that was cracked pretty high up on the nail. I took both boys to PetSmart last night to get them trimmed. The groomer wouldn't touch that 1 nail because the vein was exposed and it could be infected. He suggested a trip to the vet to check on it.

So this morning, Otis and I had an early appointment at the vet. They cut the nail, glued a cap on it, wrapped it in medical tape and then put a plastic IV bag over it so it could stay dry. He has to keep this contraption on for 24 hours and antibiotics as a precaution. He is a trooper though. He's been clip-clopping around the house and hasn't really touched the dressing.

About 5 pm the plastic bag feel off and I couldn't put it back on. So I put a rubber glove with one of Cailyn's old tube socks over it and hopefully he'll let that stay until the morning.

And so $120 later, Otis has the record for the most expensive pedicure.

A BIG WEEK

2011-04-15T10:28:00.002-04:00

Another "big" item for Miss K this week was the retirement of one of her seizure meds. Now we are back down to 2 seizure meds. Bye, Bye Lamictal.

So for the record we have big girl cup, big girl bed, big girl haircut and big step with her meds.

National Walk for Epilepsy 2011

2011-04-14T19:44:00.003-04:00

A little late in posting but here are the pics from the 2011 National Walk for Epilepsy. Cailyn's Crusaders raised more than $900 for research and awareness.

Aunt Danielle, Cousin Chuckie and Grandpa all came in for the walk. It was cold and there was actually a little snow on the grass and cars when the morning started.

Thanks to everyone for your support of our girl and Cailyn's Crusaders.

Cailyn's First Carousel Ride on the Mall in front of the Smithsonian Castle

Too many big girl things for one week...

2011-04-14T18:39:00.004-04:00

First the big girl cup, then the big girl bed and now a big girl haircut.
Before...

...And After

Big Girl Bed

2011-04-12T13:47:00.003-04:00

The Big Girl Bed was delivered this afternoon. It's really nice and looks pretty comfy.

A life marked in inchstones...

2011-04-12T08:32:00.003-04:00

So I just read this term "inchstones" and it really stuck with me.

My girl's accomplishments are marked in inchstones, not milestones.

She has not met one milestone or milemarker, or whatever the pediatricians call it.

She's on her own time schedule. We hope one day she'll crawl, she's been so close for so long, but just doesn't have the arm strength and her arms and legs coordinated and working together yet.

This week's inchstones are her new big girl bed and the possible retirement of the sippy cup. She's been on a drink strike for about a month and a half and yesterday we tried out a new cup. She seemed to do well with it so we'll see where this takes us and what our next inchstone will be.

Super busy--per usual

2011-04-06T21:26:00.000-04:00

Been super busy. We still have to post pics from the National Walk for Epilepsy.

Had a new genetics appointment for Miss K in Baltimore. Some bloodwork and follow up appointment the end of May.

I've had horrible, horrible insomnia lately and need to get in bed. More later this week hopefully.

The PERFECT class picture

2011-03-21T20:34:00.003-04:00

There could not be a more perfect class picture for Cailyn. The kid next to her is probably staring because she's snoring.

In honor of Aunt Rosie--cookie recipe

2011-03-21T14:14:00.003-04:00

One of the last remaining matriarchs on the Lupo side passed away this weekend. Aunt Rosie was my Grandma's sister, my great-aunt.

In honor of he I'd like to share a few of her recipes. The cookies were famous. Her husband was Irish so that's why the other recipes were a few she shared with me.

Aunt Rosie’s Cookies

1 White cake mix (Duncan Hines)

1 package chocolate chips

3/4 cup vegetable oil

1 egg

Mix together. Place on ungreased cookie sheet, 12 on a sheet.

Bake at 350, for 12-15 minutes

Alternate: For peanut butter cookies, put one cup of peanut butter instead of chocolate chips

Alternate: Add walnuts or other nuts

Corn Beef and Cabbage

2 big cabbages

Cut into 1/4 take off the hard outside and in the middle

Pull them all separated

Put them all in the colander

Cook the corn beef in water, bring to a boil

Dump the water and add more cold water to cover the corn beef

Simmer on low for 3 hours.

Take out the corn beef

Take a pot of the water you just used and let it cool

Cube the potatoes and cook, in the water you just cooled.

Cook the cabbage until its tender

Take the corn beef slice it

Put the cabbage and boiled potatoes on the side and hot mustard

Leftovers

put cabbage on the bottom of a skillet then the corn beef and potatoes and cook it all together

Irish Stew

Beef cooks 1.5 hours. Veal cooks in less time.

Brown meat in flour, a little bit of oil, and an onion.

Take out the onion or leave in.

Two cans of collagen soup (broth)—2 packages of brown gravy

Put the meat in the brown gravy

Let cook 1.5 hours

Little carrots cook for like 30 minutes

Take the potatoes cut them in cubes—20-30 minutes

2.5 hours at this point

Let cook all together approx 2 hours for the whole thing

Carrots and potatoes test with a fork

2.5 hours shut the gas

Take 2 cans baby peas with juice and all let sit on the stove and then get some Italian bread

Irish Soda Bread

3 cups of flour

1 table spoon baking powder

1tsp of baking soda

Mix all together

Cup and a half of milk

Tablespoon of white vinegar in the milk

2 eggs beat them

Mix in with milk

In the flour 1 tablespoon carrow seeds and 1 cup raisins

Mix flour, milk, raisins and eggs all together

Take a round pan like a layer cake in

Put some oil flour in the bottom

Put batter in 1 hour 15 minutes at 350

Happy St. Patricks Day 2011

2011-03-17T08:27:00.002-04:00

My Irish Princess 2011

Check her out last year too.

What a difference a year makes. She's such a big girl now.

Spring is here

2011-03-13T20:00:00.001-04:00

My daffodils.

A night away

2011-03-12T22:33:00.003-05:00

VIEW FROM THE FRONT PORCH SATURDAY MORNING

Last Friday I went away for the night with a few other Mom's of Special Needs kids. One of the families has a cabin near Woodstock, VA. I was thinking we'd be curled up in sleeping bags around a fireplace. Ends up the cabin is on 27 acres and bigger than my house. The details in the log cabin were amazing. It was also great to get away for one night and connect with some new friends. It was only the 3rd night I've spent away from Cailyn and the other 2 were when she was in the hospital and Curt stayed with her.

Cailyn's first trip to NY

2011-03-09T17:29:00.006-05:00

So a few weeks ago my parents came drove up to us in VA and then all of us drove to NY for my cousin Steven's wedding.

We didn't do any fun touristy stuff but really made the rounds with friends and family.

We got there on a Thursday and met some of my parent's friends for dinner. Huge followers of the blog.

Friday we met my girlfriend from UCF, Mickie and her family for lunch. Friday night was the wedding, which ended up being in the least wheelchair friendly building... Stairs everywhere, but they did help us go through backrooms and the kitchen with Cailyn to get around a little easier.

My 90-year-old Aunt Dottie even hit the dance floor with her two new hips. She was so cute.

Saturday we had breakfast with my Aunt and Uncle and lunch with my cousins on my Mom's side of the family.

Here are Cailyn and I with cousins Timmy, Emma and Charlotte.

Saturday night we let Curt go back to the hotel and rest and Cailyn and I headed out to Long Island to visit with some of my oldest friends. It was great to sit around the table and share some yummy food and old stories.

When they were here my Mom got to see Cailyn's school and her Aquatic Therapy session.

Horrible Blogger

2011-03-08T23:30:00.003-05:00

I've been a horrible blogger lately. Cailyn is doing well, I've just been super busy, meetings, appointments and hanging out with The 1% Club, my special needs Mommy support group. I went away with the Mom's for a night at a cabin in the country. I'll post pics from our trip to NY and the stay at the cabin. Sorry again for not updating, gotta hit the hay now. Tomorrow morning comes too soon.

Happy Birthday My Baby Girl

2011-02-19T17:17:00.004-05:00

Can't believe she's 3.

Swinging 70s

2011-02-17T17:09:00.003-05:00

Amazing how beautiful it's been today and tomorrow is supposed to be even better. We set Cailyn up in her swing in the backyard. She loves her some swinging for sure.

Can't believe she's 3 now either. I will upload photos from her Birthday party at school. I went in and we did some crafts with her friends. No cake or food allowed but I found this really cute cake and it's safe for all her food allergies. :-) You really do blow out the candles.

We are meeting some of her friends at the pool Saturday for a bigger celebration.

The inchworm

2011-02-11T15:11:00.001-05:00

Cailyn's new trick I call it the inchworm. Working those muscles @ PT and getting stronger all the time. The movement's all her, the PT is just holding her ankles for stability.

(More proof that the Iphone was a good purchase--so easy to just grab a quick clip and post for all to see the girl's progress.)

Bouncing baby... girl?

2011-02-03T16:36:00.001-05:00

In Cailyn's class they do lots of different activities to help her advance her skills. One item is bouncing on an exercise ball. She has gotten so much better at keeping her body vertical and her head up as well. Here's some video of her and Linda the Aide.

Cailyn does enjoy her pasta

2011-02-02T17:27:00.002-05:00

I think sitting upright in her chair makes her a bit squeely too.

Crappy snowstorm

2011-01-27T17:32:00.007-05:00

Ok so this little 8 inch snowstorm may have been more stressful for the Reese household than the 3 blizzards we got last year combined.

Yesterday Curt had a meeting he had to go to in Reston, which normally takes 20 minutes to drive to. He got home 4 hours after he left the office last night. I was stressed, he was stressed, I had to put Cailyn in her chair and wheel her to the door so I could keep an eye on her while I dug out a spot on the street for him to park. Stressful, but his commute was on the short side for some. His boss left the same time and didn't get home until 2:30 this morning.

Curt did finally get to test out his new toy. He was out for about 3 hours and did our driveway, the sidewalk and our elderly neighbors driveway. The blower did better on gas than we thought, he did all that on less than a tank of gas.

This was Cailyn's idea of helping us shovel. She had a snowday from school and I wanted to keep her warm and toasty so she hung out in the back of the van. Lots of stimulation for her with the scraping shovels, the snowblower, plows at the HS across the street and Otis and Elvis barking up a storm.

Speaking of Otis and Elvis, they really are funny together. They fight and wrestle and play all day. Otis was funny when we were out shoveling, every time I called him he would come running and jump over this little branch sticking out of the snow. Then he decided to chew on it. It was his first real snow and now as I write this he's snoring away, too pooped.

Sorry so long between posts

2011-01-24T10:39:00.002-05:00

Sorry it's been so long since my last post. We've just been really busy. School started back up and we've been working to increase Cailyn's therapies. We are adding in another session of PT and also Aquatic Therapy. The Aquatic Therapy is pricey and we have to pay out of pocket and hope insurance reimburses so fingers crossed on that one. Cailyn's doing well and had a great visit with Dr. Im last week. He was impressed with her progress. Our girl is getting stronger and more alert. Seizures much less too---Dec. 27 and Jan. 21 were the two last ones. Her birthday is coming up so we are getting ready. Can't believe she'll be 3 and all she's gone through in these past 3 years.

Merry Christmas to all and to all a goodnight...

2010-12-23T10:52:00.009-05:00

It's Amazing to believe she's almost 3. She's not a baby anymore but a girl.

Well it's been a busy year for us again. Between both working full time and then all of Cailyn's appointments and therapy our calendar is always booked. No hospital stays for the girl in 2010 though so that was a big relief.

Here's a recap:

February: Cailyn turned 2 and we got whalloped with 2 blizzards. I even ended up with a full week off work. We were supposed to meet up with my Family in Las Vegas but our flights got cancelled.

March: We participated in our 3rd National Walk for Epilepsy on the National Mall in DC. Aunt Danielle flew in to join us as well as other dear friends. Cailyn's Crusaders again raised funds for research into Epilepsy and hopefully a cure. The 2011 Walk is Sunday March 27 so mark your calendars.

June: We got Cailyn a neck tube ring for swimming, which she still really seems to enjoy.

July: July was rough. Cailyn started having lots of seizures again and the medicines she was on really seemed to be doing nothing. She had another MRI, and this was a big one, to see if they could determine a cause for her seizures and figure out if she was a candidate for surgery. I was hopeful, no one hopes their kid will have brain surgery, but if it would help I was on board. Unfortunately the tests came back negative and we were back to the drawing board on determining a cause and possible fix. With her seizurea still really out of control we started her on a new medicine which is kind of a last resort and has some serious side effects.

August: The new meds were doing wonders for Cailyn. She was still having seizures, subclinical, you couldn't see them, but you knew she was out of it for a bit. The big scary ones were gone and she even started giggling. She hadn't giggled in 2 years, since the Infantile Spasms took that skill from her.

September: So because she was aging out of the Early Intervention Services for her therapy, Cailyn started at the Special Needs Preschool. It was a very crazy time, not only did we have to get our nightowl baby on a schedule where she would be up and ready for school at 7:45, we also had to put our 2.5 year old on a bus with strangers and hope they bring her back in one piece. Whew that was rough, but she really does seem to like school.

October: In October we added a new member to the family. We got Otis (a French Bulldog/Boston Terrier mix) one weekend when we were visiting Curt's Mom in PA. He was very unplanned, I can't believe we are potty training another puppy. Also in October Cailyn got her new wheelchair. She's so big now and she's much more comfortable in the wheelchair. It also doubles as her car safety seat on the school bus.

November: We had a family reunion in Florida and Cailyn got to see her cousins Mattie and Tas who live in Alburquerque.

December: We are getting ready to celebrate Cailyn's 3rd Christmas and Curt and I just celebrated our 6th Wedding Anniversary, that's gone by quick too.

Best Wishes to all, Hope and Happiness in the New Year--Love the Reeses

(Pics: Elvis and Otis, Cailyn as Wonder Woman for Halloween, Cailyn's school picture and then her picture with Santa.)

Cailyn's stander at school

2010-12-21T17:39:00.003-05:00

I stopped in at Cailyn's school today to drop off gifts for her teachers and therapists and hung out for a little bit. She was doing some hand exercises and then they put her in the stander and the side-lyer. Over Christmas break we'll borrow the side-lyer and practice with that a bit. It makes her stay on her side to play with toys. Her preference is to roll and roll and roll.

Yummy Hot Tamale Casserole

2010-12-20T13:22:00.001-05:00

We had this for lunch today and it was quite yummy.

Hot Tamale Casserole
Jiffy corn muffin mix (prepare using directions on the box, you will need milk and an egg) and then put it in a greased 8X8 square pan.
Preheat oven 400 degrees

1.5 lbs ground beef
1 large onion, chopped
1 medium green pepper, chopped
2 garlic cloves, minced
1 can (16oz) kidney beans, rinsed and drained
1 can (10oz) enchilada sauce
1 can (4 ounces) chopped green chilies (I am a wimp so I only used half the can—personal preference)
1 can (2 ¼ oz) sliced ripe olives, drained
2 tsp chili powder
2 tsp minced fresh cilantro
¾ cup shredded cheddar cheese

In a large skillet, cook the beef, onion, green pepper and garlic over medium heat until meat is no longer pink; drain. Stir in the beans, enchilada sauce, chilies, olives, chili powder and cilantro, heat through.
Put the cornbread mix in the pan, top with meat mixture. Cover and bake at 400 for 25 minutes. Sprinkle with cheese. Then add cheese for the last 5 minutes until it’s bubbly and cheese is melted.

I put a blop of sour cream on each serving. It was quite yummy.

COLD..the 4-letter word that marks December so far

2010-12-14T07:34:00.002-05:00

COLD
It's been unreasonably, you heard me, I didn't mean unseasonably, unreasonably cold.

Today we are having 30mph winds and it is bitter outside. Bad for the dogs, bad for Cailyn and bad for Mommy. I might have to find some thermal lined pants for these morning bus runs.

Again this school thing bugs me. I understand the teenagers need their sleep and that's why in Loudoun Elementary starts first and High School isn't until 9 but it's just so friggin' cold and it's getting dark again.

The other 4-letter version of COLD this December is the cold that Curt and I have had. Luckily they bypassed Ms. Cailyn but mine's been lingering almost 2 weeks.

Maybe we'll have another 4-letter word in December... SNOW.

Otis and Elvis--2 beautiful boys

2010-12-06T07:06:00.004-05:00

1st Mall Santa Photo

2010-12-03T15:38:00.005-05:00

So here are some recent pics of Cailyn. She isn't smiling in either but I was happy she was awake and looking somewhat at the camera. She's so big and so precious.

A little delay in posting this one but it's her 1st School photo.

2010-11-24T06:07:00.001-05:00

Testing out blog from iPhone

testing out mobile blogging

2010-11-24T06:01:00.001-05:00

I'm testing out mobile blogging from email to see how this works.

Merry Christmas Early--testing out my new iPhone

2010-11-23T20:03:00.003-05:00

Campfire Cookies

2010-11-22T16:07:00.000-05:00

Oh these sound yummy...
http://beekman1802.com/general/campfire-cookies.html

Fall Family Photos

2010-11-20T19:33:00.002-05:00

More pics from FL trip

2010-11-19T07:48:00.002-05:00

Cailyn as a Manatee at Homosassa Springs, with a "Dolphin" at the Aquarium and her first time down a slide was a bit "shocking". She zapped Curt good.

Advances in Chewing

2010-11-15T17:15:00.003-05:00

Well we had a development today, it may seem small, but it seems like Cailyn's ability and understanding of chewing is improving. Today at Speech Therapy she ate a Jammy Sammy nutri-grain bar. She moved it to her molars with her tongue and chewed. Things you don't think about, how you chew, but all things that my girl's muscles can't coordinate properly.

Yeah Cailyn

Cousins Get Together in Florida

2010-11-08T18:58:00.006-05:00

Cailyn finally got to meet her cousin Tas and see her cousin Mattie again. We all met up at Grandma and Grandpa's house in Florida.

HAPPY almost HALLOWEEN

2010-10-30T07:45:00.002-04:00

Cailyn's first art project and refrigerator art for Mommy. A Halloween bat made out of her handprints.

And now the best Halloween costume ever if I do say so myself ---- WONDER WOMAN
This was when we first got to the library yesterday so I think she's a little overwhelmed by all the other kids and noise but it was good to see all her friends.

My two little men, striking a pose

2010-10-28T07:56:00.003-04:00

SUCH CUTE FACES

The Little Guy and Halloween Preview

2010-10-28T07:23:00.003-04:00

So I've been a slacker at posting pics of the new little man, officially named Otis. He's been a good addition to the family. He's gotten Elvis up and moving more and is very loving to Cailyn. We've been taking him to puppy training Wednesday nights. We are working on responding to his name, watch me and sit. Walking on the leash is going to be a little tricky he's just not into it yet and sits or lags behind as you are trying to walk. He's definitely hit a growth spurt too. Otis' parents breeds, French Bulldog and Botson Terrier, both have ears that stick up so we'll see if his go that way eventually. Here's one pic with the ears up.

Also here's a preview of the fabulous Wonder Woman costume I made for Cailyn for Halloween.

This week's recipes

2010-10-16T23:40:00.003-04:00

So I'm sitting her Saturday night and planning my menu for the week---woo-hoo, another exciting Saturday night in LoCo (Loudoun County).

Borrowing some recipes from two of my Mommies (thanks Lisa and Julia)

So the plan for the week is Mexican Bubble pizza, White Bean Chicken Chili, Chili Chicken Tacos, Meal in one casserole and Sausage Stuffed Peppers. I have my third cooking class this week and we are learning to saute meats, beef, pork and chicken, should be yummy.

This week we will also start a puppy training class with Otis and Sarah will come babysit Cailyn on Wednesday nights. We have to get him to walk on a leash and hopefully learn a few tricks like we did with Elvis. It will be a good refresher too and maybe now that he's old we'll be able to teach Elvis stay. The two are getting along well, the only issues are feeding time. The puppy has gotten nipped twice now for trying to get into Elvis' bowl. The cat is another story. Otis wants to play with her and she wants no part of him. Curt said there was a confrontation in the hallway today and when Otis ran away a trail of scared pee-pee followed him.

Sitting here in the bedroom on the laptop looking at recipes and updating the blog and one of these two dogs needs a cork, oh my God stinky silent dog farts may be the death of me.

Here's another photo of Cailyn in her new wheelchair at the Craft Fair today.

Shiny new ride

2010-10-15T22:10:00.002-04:00

Cailyn got her new wheels today. Seems like a good fit. We have to get a new shoulder harness because it's a little too big and loose for riding on the bus. This will now serve as her carseat on the school bus.

Oh boy, a new addition.

2010-10-12T11:21:00.003-04:00

Well we adopted a new puppy this weekend. He is sweet and loving and super cute. He's a french bulldog and boston terrier mix. He might be named Otis but we aren't 100% yet.

He's been good with Cailyn and Elvis so far.

Feelin' better

2010-10-05T15:03:00.002-04:00

Miss Cailyn is feeling much better. We kept her out of school one more day to rest but now she's at therapy with Daddy. She's happy, smiley and giggling. Back to school tomorrow.

I have my first of 4 cooking classes tonight. The county Adult Ed offers all kinds of classes and this is the second time I'm taking cooking. I took quick weeknight dinners class last year and this year is cooking basics. We'll learn knife skills, sauteing etc. Should be fun. We make dinner during the class and get to take home leftovers too.

And the hits keep coming

2010-10-02T10:32:00.002-04:00

After a 104.4 fever overnight and a trip to the dr again--now the girl has an ear infection--her first. She's on 7 medicines now and its getting confusing keeping track. Feel better soon Miss "K".

Day 3 of the flu

2010-10-01T20:51:00.002-04:00

Cailyn had a yucky day. She was on and off with the fever and topped out at 102.7. She had the sweaties and we had to change her clothes twice. She slept until about 8 and then starting at 10:30 she took a 4 hour nap. We are alternating between Tylenol and Ibuprofen. The docs always say her seizures will get worse when she's sick and, knock on wood, they've been under control.

Poor girly

2010-09-29T18:54:00.003-04:00

My poor girly is sick. She got off the bus and looked bad. She was shivering and had a fever. We went to the pediatrician and she's got the flu--despite having gotten the flu shot on Friday. We got Tamiflu to hopefully cut the length of this run. She's trying to rest now. No school or therapy for the rest of the week. Praying that Curt and I don't get this bug too.

Sleepy lady enjoying the rainy day

2010-09-27T15:08:00.002-04:00

Oh Cailyn, you always make it interesting. Got a call from the school nurse that Cailyn was sleeping very heavily (for 2 hours and with screaming classmates) and they were concerned that they couldn't wake her, worried she was sick.

The nurse checked her with the stethoscope and everything. I was getting my things together to go get her and they called back and she was awake and eating snack, so she was good. Oh, well, she seems ok we'll see what the afternoon brings.

Lunch in the Country

2010-09-25T19:04:00.003-04:00

Today we took a drive in the country and hit Grandale Farm Restaurant. Curt and I both had tomato bisque and then I had a chicken salad sandwich and Curt had steak. Then for dessert I had creme brulee and Curt had a lemon peach torte with a walnut crust and honey drizzle. It was all yummy.

Here's a picture from veranda where we ate lunch and a pic of Cailyn drinking water from a glass, she did pretty good with that.

Food Planning and Prep

2010-09-20T13:02:00.003-04:00

With my new early wake up time and Cailyn's more rigorous schedule we've been having a hard time planning meals and getting to Mommy and Daddy dinner before 8 or 9 o'clock and not having to order takeout.

So this weekend I pulled a few recipes, planned my shopping list and planned my menus. I tried to pick a majority of the meals that can be made in the crockpot to save us some time in the evenings. So yesterday I borrowed a recipe for dinner from my Mommy friend Julia for Chicken and Biscuit Casserole and then Curt and I had the leftovers for lunch today.

Tonight we are having slow cooker spaghetti and meatballs. It's an interesting recipe because you mix the meat with a packet of stove top stuffing mix and then put the meatballs in the crockpot with sauce and vegetables over them. So we'll see how this one turns out too. It seems like it will make a lot so I'll probably put some of these in the freezer for another date.

On the list for the rest of the week is BBQ Chicken Pot Pie (from my friend Donna), Beef Stroganoff and a few other tasty bits.