What's a baker to do?

When it was time to complete our wedding registry, we had a list of essential items needed like plates, silverware, glasses and pots and pans. There was one item I held near and dear to my heart. I knew it was something that I probably would never purchase for myself, but I would use it weekly and I had been coveting it for years just waiting to be standing at Macy's with the scanner in hand! (of course with my beloved fiance by my side) Yes friends, it's The Kitchen Aid Stand Mixer. My lovely bridesmaids purchased this prized possession for me, at the wedding shower in Camp Hill. Many of you know......I Loooove to bake. I could bake everyday if all baked goods were healthy and fat free. When I was growing up, I always said I wanted to be a baker. Marketing.....Baking - guess it worked out ok. But baking fulfills many things for me. By myself and some good tunes, it's calming, relaxing and fulfilling. With my kids it's educational and for our family and friends it's my gift to them.

I also have a hand mixer, which I use for quick jobs like brownies and egg whites, but it passed away this past December during prime baking season and it's been on my list since. So on Thursday, I was making a batch of Barefoot Contessa's chocolate chip cookies for a friend. The mixer was beating the sugar and eggs, while the princess was measuring flour. And my heart stopped as I heard my mixer make a funny grinding noise and come to a halt. I thought surely this must be a power issue. But to my dismay, my mixer had fell ill. I immediately got on-line to find service centers. This was heart breaking. Hubby's reply was "hm". I said "that's it?" "hm". Seriously? The Kitchen Aid mixer was suppose to outlive my husband and I and be handed down generations, and your reply is "hm"? He immediately came to his senses and recognized this was very important to me and we began to discuss our repair options.

But now it's the day before Easter and I need to make the Bunny cake. I've made the bunny cake every year since princess was born. It's a tradition that my Aunt Suzie did each year for us as kids. I couldn't wait to do it for my family. Many of you have partaken in the feast of the bunny cake and I'm sure you can appreciate this dilemma. I will not let this tragedy stop us - we will move on and conquer without a stand mixer or a hand mixer and make this bunny cake! Princess was ready in her bunny ears, which I think are permanently stuck to her head this month since Pappy and Rhonda sent them, and her new matching apron.

My white cake directions call for whipping the butter and sugar for 5 minutes. Ouch - I have no idea how women did this before mixers! Amazing! After about 4 minutes, I remembered a hand gadget that my mom and I once found at Crate and Barrell many years ago....well it seemed to work OK.

It still took about triple the time to make the cake - but we survived and the bunny hops on another year! SUCCESS!

As for the mixer, he'll be sent in to headquarters for repair, I'll keep you posted on the diagnostics.

Happy Easter to all!

Catching Up....Hubby's Birthday, Grass Heads and Bunnies

Quite a random title, but I'm a bit behind on my blogette duties!! A week ago we celebrated hubbies birthday! Yeay! He had to leave on a business trip but we squeezed a little family celebration in.Now some of you might have noticed the beautiful cake that the princess decorated all by herself. Others might have noticed the dagger like objects pointing at our son. Although it looks dangerous, they are plastic and quite plyable, so no fear! They're actually part of hubbies gift from princess - they're frogs that spin to place around the yard as a water hose guide.

And then next I had to show the craft that we made almost a month ago with our good friend who was visiting as her momma was having a baby. At first I was a little leary if we were going to get grass, but low and behold - Bertha has hair!

And finally we wanted to let you see a glimpse of our driveway this past week. Because of the beautiful weather, there were some days when there was more chalk then blacktop! However we have been impressed with our gals drawing abilities. Since hubby and I are simply stick like figure artists, we're kind of surprised of this budding gift she has! Keep in mind, she's only 4. This is an Easter bunny that she drew for our neighbors.

Stay tuned for more, little man got his first huge bump on his noggin, just in time for Easter pictures. We thought we would wait and see what color it turns tomorrow before we take our picture. Such loving parents aren't we :0)

Our First Fragile X Clinic

We have spent the past 2 days up in Baltimore at the Kennedy Krieger Institute. The National Fragile X foundation created a consortium of clinics where a Fragile X Neurological expert heads the program and has several multidisciplinary services to help review patients. Some of the clinics actually do their own research as well. Kennedy Krieger is one of the top 3 in the country, there are only 12, so we're very blessed to have this opportunity only 75 minutes away. Many families fly all over the country for these programs. Hubby and I are thrilled with the head doctor. He's the neurologist and extremely knowledgeable, very plugged into the FX community and also does extensive research for FX.

Monday was the first day of the clinic. With many prayers, Jimmo slept thru the night for a full 9 1/2 hours. That's very good for our little man, so we knew he would be rested and ready to perform. The first appointment was with the Neuropsychologist. This portion of the clinic was about 3 hours and they performed the Bayley test, which we've done many times in the past. It's basically a standardized test that tells you where the child falls cognitively with language, visual and adaptive skills. Our only concern with the clinic was this particular appointment. All four of us (mom, dad, little man and Neuropsychologist) were stuffed in this small little hot room for 3 hours. Little man, and probably a lot of 2 year olds, are not happy with small rooms, warm rooms or crowded rooms, so we knew that performance would not be his best. In past tests, the administrator of the test let us use his familiar toys and he scored much better. In this instance they wanted to use their standardized tan cups, spoon, small car and blocks. Every institution has different protocol so we knew his results would be lower. After this appointment we were done for the day. We were home around 2 and picked up the princess at our neighbors house. Our neighbor has two older boys, so enjoyed the girl time and Georgia had a blast! After dinner, hubby brought princess down to our good friends in the south - that is what the Northern Virginians call Dumfries. ;0) She was so estatic to spend this time with her buddy. She was talking about this sleepover for about a week!

The next morning, great sleeping again for little man, the remainder of the family left for Kennedy Krieger about 6:45AM. We began our morning with our Speech appointment. She was outstanding, both Hubby and I really enjoyed our time with her. She was extremely patient with little man and knew how to keep things low key and calm for optimal performance. Along with testing for speech, she completed the ADOS test, which is a standardized testing for Autism. Quick review - Fragile X boys usually show Autism like characteristics. Some Fragile X (FXS) kids have an additional diagnosis of autism, but not all. But FXS is the most common known cause of Autism. Little man did great with this session and played well with the speech therapist. We then had an extended break for lunch. We ventured to a park and played and found the yummy pizza joint the clinic suggested for lunch.

Our next appointment was with the Psychiatrist. The clinic was running behind at this point, so little man was getting tired. He pulled thru and did some interactive play for him. This appointment is for discussions regarding behavior issues, social interaction and pharmacologic intervention. At this point, we have not seen any behavior issues in little man. Although this is a significant part of Fragile X boys, so we continue to not be naive to this matter. This is the place we also discussed his sleep issues. The doctor suggested using 1mg of Melatonin. We've been researching this since it's a natural hormone. We're visiting with our homeopathic doctor in a few weeks so we'll discuss with him again.

And finally we met with the head doctor of the clinic who is the Neurologist. As mentioned above, this doctor is the reason we come to Kennedy Krieger. He has the perspective of studying the rats in the research lab as well as the patients in the clinic. Hubby and him discussed extensively the hope of getting more funding thru congress for research. Last week was National Fragile X Advocacy day on capital hill. Both hubby and this doctor participated and we anticipate more partnering down the road. This appointment is where we discussed genetic questions, medical condition concerns, joint laxity, reflexes and any other Fragile X Concerns. At this point it was 2:45 and little man was just begging for a nap. So as the appointment wrapped up, I took him out to the car and Hubby finished up with the parent questions. After one lap around the parking lot he was snoring. I parked in a spot far enough from the general parking area and after Hubby finished up with the doctor we sat out on a blanket for the next 75 minutes while little man snoozed. Thank goodness for those 65 degree days in March!

So finally it was the last appointment which was the summary panel of all the doctors we visited with. The reason this clinic is so significant, is two fold. First - these doctors see other Fragile X children so they are able to compare skills, temperaments and medical conditions. And they're obviously the most educated on Fragile X. It's so nice to sit across from a doctor and not here the normal - Fragile What? Second - these appointments are now a benchmark of comparison for little man's future visits. This clinic will become the most significant professional help we get for little mandevery 12-15 months for the rest of his life most likely.

But as for the results......between the Neuropychologist and the speech therapist, they ranged his language skills, visual skills, adaptive skills, receptive language and expressive language anywhere from 9-12 months. This is slightly lower then we and other therapists have characterized, but we have to take the environment into consideration. As for the Autism diagnosis, they were concerned that Jimmo doesn't point to objects yet, but overall his motor development is low, so this is somewhat expected. His eye contact and interaction is great. But because of the pointing, they simply placed him on the Autism Spectrum Disorder (ASD) but without an official Autism diagnosis. This placement on the spectrum will actually benefit him at preschool next year, enabling more services. The speech therapist also encouraged us to continue with our picture communication system we currently use around the house. And an optional 4 week PECS class was offered to help me understand the "official" functional communication system and implement this into all facets of little mans life besides just at home. As for the Neurologist and the Psychiatrist, they emphasized their concerned of his motor function skills. He's delayed more then most boys who have Fragile X. He said it was uncommon but not unique. He also said that between the age of 2 and 3, there often is a boost, so perhaps we're just around the corner. So in order to help this along, we're adding to our current repertoire of therapy with some private therapy. We'll go back and visit with the head Neurologist again in 6 months to check on his progress. And then again in a year for the full clinic. I should also include that most Fragile X kids are diagnosed at ages 4 or 5. So the comparison model for a 2 year old is much smaller of a "database" then for 4 or 5 year olds. And the OT component was absent from the clinic, so we'll be going back up again for that piece in a few weeks.....lots of trips to Baltimore....all great stuff! And finally we discussed education. The panel highly recommended a 5 day week program for the fall to add a consistent program with therapy included. This broke Mama's heart as I was really hoping for 3 days, but knowing it's best, I'll try and get over my attachment issues.

We left Baltimore around 6:30 and after picking up the princess at our friends house, who were so incredibly flexible with our delayed evening, the entire family was fast asleep by 9pm! Overall we're very pleased with the clinic and excited to work hard over these next 6 months! Thank you all for your prayers over these past few days, we are truly blessed.

Although this was a lengthy blog, these types are the reason for our blog. The family entertainment is sprinkled in between for fun! Come back and visit us soon!

A Beautiful Thing

For those of you who are unfamiliar with this "beautiful thing", this is our local grocery delivery truck in my driveway at 8:15AM today. For a mere $4.95, my hand picked groceries came to my door. We are currently without car after our "flat tire without a spare" episode yesterday. It's so exciting not to have to take children to the grocery store - multi-tasking at it's best! I might have been one of the delivery mans more excited customers of the day as the three of us were waiting by the window with glee but hopefully he didn't see me taking the picture of his delivery truck - HA!

The Tysons Adventure

We had plans to meet my dear friend from high school and her adorable 14 month old daughter at Tysons Shopping Mall yesterday mid-morning. Well little man apparently had a different plan in mind when he woke up at 3:45AM and decided to play until the sun came up. As I explained in Adventures of a Saturday Night, his nighttime sleeping can sometimes be disturbed by that pesky hyperarousal! Usually within an hour or two, he settles himself down and catches a few more snoozes. Not this time. So I'm sitting on the edge of the bed in the morning discussing with hubby - Should I go or Should I stay home. A common discussion we have. It's one of those inner battles I fight. We can pull thru this, we can do it, we don't have to change our lifestyle - just strap on your boots and get out there! Afterwards I see this image of God looking down on me, "Oh mama, when will you learn", as he grins and shakes his head.

So off we go to meet our friend at Tysons. Everyone was smiling and happy in the car ride. We got to the mall, and little man was asleep in the stroller within 5 minutes. SWEET!!! He was technically 3 hours behind so a nap was great! We shopped and played in the Disney store for awhile. (And a little tip for moms - this is our new playground rather then those germ infested playground pits in the mall. We could spend hours in there finding characters in the big stuffed animal wall and staring at Cinderella) We shopped a little more and then headed up to the food court.

Little man decided to wake up as we entered and wasn't a very happy little man. After about 15 minutes of trying to calm him we packed up our pizza and traveled home. Poor guy was so overtired and cried the whole way home. I rocked him a bit and he finally came around to eating his pizza and then napped again. But back to the food court.....I expected a slight protest from the daughter since I said "Let's Go" in mid-bite of pizza and the germ infested playground is painfully parallel to the food court. But instead she obediently put on her coat and carried her pizza to the car without a complaint. I'm truly amazed by her each day. She's learning inconceivable virtues by being the big sister of a special needs child. So as we were driving home, and little man is crying while princess and I were discussing why we still have 4 more months until we can go to the pool, I was trying to think of something fun for her - a special treat. A HA! So after little man was settled for his afternoon nap, we made strawberry sundaes with chocolate fudge, whip cream and sprinkles and then we settled on the couch for a lovely afternoon of Cinderella together. Ahhh the joys of little girls. She was dripping with delight.

So all in all - it was a fine afternoon. I had a little over an hour of shopping time with my friend, little man got back on schedule and a wonderful afternoon with the princess. What more could a mama ask for in a day?

And I don't think I've shown you all how cute her new haircut is...here's a side view.

Stylin for a four year old!

And thank you all for your inquires and prayers for my Pap-Pap. All is good and he's back at home with Grammy. It will be a slow recovery but he's very happy to be back in his recliner!

Visiting Pap Pap

Late last week my Pap Pap had fallen ill and went into the hospital. The poor guy had 3 clogged arteries, one at 100%, one at 85% and one at 65%. Because of his weak kidneys, his age and black lung (my Pap was a very proud coal miner) they decided to go forward with stints rather then open heart surgery. On Sunday we decided to piggy back on Dad's already planned but convenient business trip and share a hotel with him so we could visit Pap Pap in the hospital. Hubby switched his hotel from a swanky downtown Hilton to a family friendly Residence Inn outside of town. After talking with my friend Kamber, who was 5 days overdue with her 2nd child and I was on call to watch her first child, we made some back up plans and off we went....like a herd of turtles as our Daddy says!

Last time we stayed at a hotel, it was due to being snowbound on I-81N in the lovely town of Scranton, PA. It was February and we were on our way to see hubby's parents, Nicki and Jim, and of course to watch a Syracuse Game at the Dome. We made a big deal out of staying in the hotel, so it would be a fun memory for princess. We hoped it would erase from her memory the previous 12 long hours we spent in the car. Dinner at Friendly's, ice cream on the bed, staying up late - loads of excitement. So since then, princess always mentions how much she LOVES staying in hotels. In fact this past year, she asked Santa if she could stay at a hotel with him. Interesting....not sure where to go with that, but luckily we knew (wink wink) the Santa so he understood. So on Sunday when we mentioned we were going to a hotel, you would have thought we were going to Disneyworld. I heard more WOOO HOOO's out of that little lady then a pack of of hyenas in the wild. Hubby and I laughed, can you imagine the day when we actually do take her to Disneyworld? We think she might just fall on her knees weeping with excitement on Main street when she sees Cinderella's castle!

The kids and I went to visit Pap Pap the next day while Dad proceeded with his work trip. We got to spend time with Pappy, Grammy, Aunt Suzie and Cousin Jennifer. Lots of time in the waiting room but we had fun entertaining the kids.

All said and done, Pap Pap had 12 stints and an angioplasty balloon done over the course of 2 days. Now have I told you my Pap is 87 years old? What a trooper! He's also quite a jokester, so as my Gram enters the recovery area, his first words are "Look Jean - I made it"! We knew he was feeling well at that point! Recovery is doing well and we hope he's able to return home by the weekend.

After our hospital visit, we went back to the hotel to have dinner. Did I mention how much I like Residence Inns? 2 bedrooms a living room and a kitchen - and very affordable! So I made some dinner for the kids, I was tired of eating out at this point without hubby - too much work. I realized in our quick packing frenzy, I had forgotten a booster seat for little man. He mostly needs something to just hold him still, so I devised my own with an extra fitted bedsheet - is this legal?

To keep with tradition - the first night we had popcorn on the bed and the second night the princess was introduced to Ben and Jerry's. The two of us shared some chocolate chip cookie dough on the bed. We have now renamed this ice cream to "Treasure Hunt". Wonderful memories! And I stayed up watching too much TLC until Daddy came home. Good family times!

Pap Pap, you're in our prayers for a quick, painless and healthy recovery!!

Jimmo's Six Month Review

Today was little man's six month review with the Early Intervention Program. A little background on what this is......the Early Intervention Program is a service required by every county which provides therapies for infants and toddlers with disabilities. This Early Intervention Program discontinues when the child turns three and the next step is a program called Child Find. Each year there is an annual review and then a 6 month review in between with all the childs therapists together in one room. We review the past goals and make new ones when applicable. Thru this program, Jimmo has a physical therapist, an occupational therapist and an educational specialist. He gets speech therapy thru a private organization.

Today Jimmo is exactly 2 years and 4 months old. We're very proud of his progress. Obviously he progresses on his time, but each milestone brings such joy to us! Here are a few of the milestones we were able to check off today. As proud parents - we just wanted to share.

• Ability to place objects in a container and dump them


• Understands 5 interactive songs and the actions that accompany them (ex. Itsy Bitsy Spider)


• Can choose needs from pictures


• Uses both hands at midline to play with toys and objects


• Plays with toys correctly and purposely - this was huge for us!


• Pushes cars/trucks around a room with purpose


• Responding to several verbal gestures


• Big improvement in imitation skills - YEA!


• Walking solid with a 1 finger assist with not such a wide base of support


• Crawls up the stairs well and now cognitively understands how to come down

For gross motor skills he's at a 12 month level. For fine motor, cognitive, receptive, social and adaptive level he ranges from 11 months to 16 month level. Because of these accomplishments, he now qualifies for a 9 week Sensory Motor Therapy Playgroup that is held at the county office. This will be a great experience for him as he gets to have additional therapy in a group setting with other little guys and gals at his level. Mom and Georgia are excited to participate in the fun as well! We hear there's lots of shaving cream and pudding involved!

We're having a full 2 day evaluation done the first week in March by the Fragile X experts at Kennedy Krieger Institute in Maryland. They have one of the 12 official Fragile X clinics in the US. Jimmo will be reviewed by a neuropsychologist, speech therapist, autism specialist, neurologist, and a psychiatrist. Last May, Jimi and I visited initially with the head Doctor at this clinic and have been anxious since to have this clinic completed. You can imagine the list of questions we've accumulated since then. It's so nice to be in an office of experts and you don't hear the words - Fragile what?

So that's our little Jimmo 6 month therapy update....many more to come!