Tuesday, July 31, 2007

Man Meat

This morning while Archer was eating his Cheerios, he looked up at me, flexed, and said, "Dad, I have Man Meat in my muscles." Apparently, Uncle Devin was calling bacon "Man Meat" on Sunday in an attempt to get Archer to eat it. It worked, and now Archer is convinced that his muscles are bigger and full of "Man Meat". That's awesome.

Saturday, July 28, 2007

Disneyland With Uncle Devin

For the past couple of weeks, Archer and I have been going to Disneyland on Saturday mornings. We try to get there right when it opens at 8am. At that time, we can usually get 5-7 rides in before 11am when the crowds grow too big and when the sun is too hot. Today, we invited Uncle Devin and had a great time. We're definitely going to do it again.

Good News

We had our big meeting with the Metabolic Doctors over at CHOC last Thursday and it went better than we could have hoped for! The Doctors went over her charts, blood work, pregnancy history, her delivery details, medical history, family history, why we had been concerned about her, and did a physical exam. They want to do a more extensive panel (blood test) to get a better picture of what is going on however, they were impressed with her progress in the past few weeks. After all of the medical jargon had been used, what seemed to be the 'main' Dr. turned to us and said in very plain terms that "Children with metabolic disorders regress and slowly their health deteriorates. Period. Della is progressing. Although her blood work has some abnormalities that could indicate something serious, I am looking at her and seeing the opposite. There is a chance that she could be normal however let's not draw any conclusions until we get some of these results back." I can't describe how happy we were to hear him say that. This is the first time that I have allowed myself to think that Della could come out of this relatively, well, normal. I try not to let this thought be too prominent, just in case.

Up next is Della's immunizations since she hasn't had any since she was 2 months old. We continue physical therapy, await the blood test results, and we will go ahead with the MRI on August 7th to look at the functioning of her brain. Again, I can't thank you all enough for the help, dinners, listening ears, and prayers given to our family. Hopefully we will continue to get good news.

PS Della enjoys eating prunes as you can see from the above picture. She is nearing 16 lbs and pulling out of the 20th percentile in weight. Sometimes I am disturbed at the amount of food she eats, but as long as she continues to open her mouth for more, I will continue to shovel it in.

Wednesday, July 25, 2007

Farmer's Market

Go ahead, I dare you to try and get some of my Kettle Korn.

Aunt Anne teaching the boys how to bust
a move.

Della getting her prune juice on.

Mia holding Tyler's hand.

Sunday, July 15, 2007

Della Update (and our 100th post)

First I wanted to thank all of you for your outpouring of support and love that has been given to our family. It has been such a great source of comfort to us and we really appreciate it. The above picture is of Della at the hospital last Friday before she had the tubes put into her ears. We had to be there at 5 am which is very early at our house. On top of Della being grumpy we weren't able to feed her anything until after the surgery. As you can imagine, she was pretty upset. A "child life specialist" came around with toys and included within them was the toy pictured above. It was a jungle scene that played a soundtrack of a stream. Della was fascinated and quickly stopped crying and soon fell asleep. Her surgery went well and we are anxiously waiting to see how her development improves.

On Thursday we met with a child development specialist/physical therapist named Tim Healy. I have to say that it was a fascinating and educational experience. He is currently writing a book on how touch affects a child's emotional and mental development (i.e. the differences between children who are held vs. children who aren't. Think Romanian orphanages). He and Dr. Brazelton are friends and have done a lot of research together. Anyway, he said that he didn't detect any symptoms of a mitochondrial disease and I couldn't help but breathe a HUGE sigh of relief. He also said that he didn't see any devastating deficits in her development. Dr. Healy will continue to follow her progress for one month. If she regresses or doesn't progress at a good pace, then she will start a regemin of therapy. So that was really good news.

For now that is all we know. I will do my best to keep people in the loop. Our next big appointment is July 26th with the Metabolic Specialists. Thanks again for all of those who have called, e-mailed, and helped us with Archer.

One more thing...I went and bought that Fisher-Price toy because it worked so well. At 2 am that night we heard the toy on and a few minutes later it shut off. Then we heard Della turn it back on again. Genius! I highly recommend that toy to anyone with kids. It's great because it hooks onto her crib. I found it at Target for cheaper that the $35 that it is listed for on that link.

Della's First Solid Food

Archer had to get in on the action and was "helping" me make the cereal.

All in all Della did very well. She has decided that rice cereal is delicious and that she likes to eat an entire bowl for breakfast.

A Mish-Mash of Pictures

Archer modeling "hats" with Papa.

Static Hair

The Calder Family Feet.

Baby Della

Archer crying with pieces of sucker stuck all over his face.

Going Home

Wednesday, July 11, 2007

So What's Up With Della?

First for the happy news...

Della turned 6 months last Saturday and her first tooth erupted (isn't that a lovely word) yesterday.

Onto the big stuff...

We met with the Dr. today and although we still don't know exactly what is going on, we have an idea and we are moving in the right direction. He still thinks it is a metabolic disorder and possibly a mitochondrial disease (which can cause a metabolic disorder). Unfortunately there is no cure for either however some metabolic disorders can be managed whereas a mitochondrial disease is degenerative and eventually will take the life of anyone who has it. Obviously we are hoping it isn't that.

Anyway, we left the Dr. with a renewed sense of optimism. The Dr. is hoping that we will be able to give Della the enzyme she is missing and manage the metabolic disorder with diet. She is very behind developmentally and with a few years of intense speech, occupational, and physical therapy, she could be mainstreamed into school and live a relatively normal life. There is also the possibility of her having mild to severe mental retardation as well as physical handicaps. It could also fall anywhere in between. There are still many more tests to run including more blood work, a full genetic makeup,MRI, chromosomal profile, and extensive family histories done on both sides (Relatives, expect phone calls from us soon and prepare to air your genetic dirty laundry. Don't worry, no blood required). So we meet with the Metabolic Team at CHOC on the 26th of this month and they will be able to work with us to pinpoint Della's specific disorder. Tomorrow have an appointment with a developmental specialist and he will evaluate her and help us create an eating plan (she hasn't started solids because she can't hold up her head) as well as some things we can do to further her physical and mental development. We also have an appointment with a geneticist and an MRI on August 7th. It going to be a busy couple of weeks!

In the meantime, Della is having tubes put in her ears on Friday to help alleviate her chronic ear infections. She is almost completely deaf in her left ear with severe hearing loss in her right ear due to fluid that has solidified in her eardrum. We are anxious to see how this will affect her development as well as her Equal Librium.

So that is all we know for now. We appreciate all who have prayed for Della and for those who participated in the fast on Sunday. We really feel at peace with her future even though we have no idea what that will look like. Even before we knew of her illness, many have remarked at what a sweet, calm spirit she has. There has been something special about her from the very beginning and I am not sure if this is due to her being sick, or if this is simply the way she came. Family and friends often joke that they have never heard her cry and really, it isn't often that she does. Della is the most loving baby. When you pick her up, her entire body relaxes and she snuggles right into you. We have been so blessed to have Della in our lives and I know that she was sent to teach us many things about endurance, unconditional love, and the sweet innocence that only a baby possesses. My sister-in-law Amy has been a wonderful mentor to me during all of this. Her son Tyler is autistic and she has had so many words of wisdom from a parent who in a way, is mourning the loss of the future they had hoped for their child. She told me something that has stayed with me through the past week. She pointed out that although her son may never go to "regular" school, or go on dates, or even be able to say "I love you", her son is loved by others in a very special way. This couldn't be more true. We all hold a special place in our hearts for Tyler and his sweet smile and that's the only way that I can describe it. I think the same is true for Della.

Thursday, July 05, 2007

(A Very Busy)4th of July

We spent the afternoon at Uncle Mike and Aunt Chris's House. They have a pool and a beautiful patio that we used to the fullest!

Uncle Mike's bubble machine.

We were also celebrating Grandma Calder's Birthday. She is in the left side of this picture with Archer and Devin.

Eli and Mia.

Archer in the pool. As you can tell, it was very bright outside.

Mike, Dick, and Nancy.

Archer with floaties (courtesy of Uncle Mike).

Della's first 4th of July.

Archer and Tyler.

Della wants to know who invited the Paparazzi?

Mia (9 months), Della (6 months), and Lillian (12 months).

Archer refused to watch the fireworks without wearing these headphones. Once he put them on he had a hard time hearing what others were saying to him and he assumed that we all suffered from the same problem. His resolution? To yell at everyone around him.

The Various Stages Of Our Garden

April 2007
Chad (and Archer) built 3 planter boxes.

1 May 2007
We planted carrots (seed), watermelon (seed), zucchini, cantaloupe, corn (seed), bell peppers, tomatoes, and strawberries.

1 June 2007
Our first strawberries.

Archer's version of helping.

1 July 2007

Our first harvest.
We also had picked a zucchini however I mistakenly gave it to Archer to take into the house. We found it the next day in the backyard with teeth marks in it.