Monday, April 27, 2009

Connectivity, Part 2

I am incredibly touched by the comments left on my first Connectivity post. They reminded me of a news story years ago in which someone did a study of some kind and determined that with all our technology we are more disconnected than ever before. Here we have email, text messages, and cell phones yet we are not connected on any level to one another. How is it that we can have so many brief contacts with a person and yet still not be connected?

One must wonder if it is the lack of common denominators that keeps us from connecting with those around us, i.e. different religions, different jobs, children, no children. You get the idea. It is certainly harder to connect with someone if their religion is different or if they have children and you don't. It is hard to know what to say and what not to say. It is hard to build that foundation for friendship if you first don't fit into the same category.

Which leads me to the next question. At what point in our lives do we have enough common denominators that we feel like we fit in a category and thus feel connected to those around us? Is it when we are children? Some would argue that they didn't feel connected to their own families. Is it college? Is it church? Is it children?

I would argue that none of those create a common denominator to build the connectedness we so greatly desire.

So what do we need to feel connected? I have pondered this question for days. With each comment to my first post, I have wondered what it is that connects us. I have come to the realization that the connectedness I seek is partly with myself. Is it true that others need to connect with themselves in order to connect with each other? I can't say yes or no.

I have also come to the conclusion that I need to connect more with God. Perhaps, part of my trying times is to expand my Faith in God and to reconnect with Him.

What connects us? Obviously, it is not technology and I am not sure it is a common denominator of children or religion. I am going to continue pondering this question and may revisit it at a later date. It really has provoked a great deal of pondering on my part.

Thursday, April 23, 2009

Tying the Pieces Together, Part 2

Sweet relief. Sweet relief is what I feel today after our highly anticipated meeting with our geneticist. But, before I explain how all the pieces of the puzzle finally fit together, allow me a moment to express my gratitude to a very down-to-earth doctor and scientist, Dr. Angela Scheuerle, MD, FAAP, FACMG. Dr. Scheuerle took great time in understanding us, as a family, and our medical history. Talking with her was like talking to a friend. During our meeting today, she explained everything on a level that we, non-scientists, could understand.

She explained that we should have two of each chromosome and that a deletion or duplication (addition) is what causes genetic syndromes ranging from Williams Syndrome (caused by a deletion) to Downs Syndrome (caused by an addition to Chromosome 21).

Our son has a duplication of a gene. This gene is known as 7q11.23 duplication. This duplication was first discovered in 2005, thus not a lot is known about the problems occurring with this type of genetic syndrome.

We do know delayed speech, delayed motor skills, and slowed growth are all connected to 7q11.23 duplication. It has also been documented that autism or other type social anxieties as well as various learning disabilities have accompanied some with the gene, but others have no problems socially or educationally. The issues with social interaction and learning dissabilities seem to span the spectrum of severe to non-existent.

Dr. Scheuerle explained that there are many people walking around with the genetic duplication but show no symptoms whatsoever. This is very positive for us. Even though we have a 14-month old who is not talking and not walking, it does not mean we will be dealing with serious issues the rest of his life. It does however serve as a road map for us, telling us what may be ahead of us. In which case, we can be better prepared.

While constipation, a serious problem for Snugglebug, is not considered to be a symptom of this syndrom, Dr. Scheuerle surmised that it could also be related. This is the final piece of the puzzle. She explained when you have a vast array of issues that seem to be unrelated, they are typically related to a genetic syndrome from either a deletion or duplication of a gene.

Currently, Snugglebug is receiving physical therapy, and we hope to begin speech therapy soon. He is already progressing in his motor skills which thrills me. I've never been one of those moms who wanted their baby to stay a baby. I couldn't wait for him to walk, and I still can't. I can't wait for him to talk either. I can't wait to hear what his little mind is thinking about! I can't wait to have a conversation with him. All these things are going to come in time. I must hold steadfast to the fact that God is a gracious God, and that He will see us through.

I'm encouraged by all we have been through in the last few months and even more encouraged by what we learned today. The pieces of the puzzle have been tied together and presented with a solution.

Wednesday, April 22, 2009

Blessing a Stranger, and the Stranger Was Me

Today, we had a very disappointing visit with a Gastroenterologist. He didn't tell us anything we didn't already know. He didn't give us any suggestions that we hadn't already tried. He told us the same thing we have been told over and over again. Constipation really isn't something to be worried about. We left with nothing new to try and only hope that it might clear up on its own eventually.

By the time we left it was lunchtime for both of us. We went down the street to a Chik-Fil-A to eat lunch before heading home. Obviously, I was not in the best of spirits. After all, I had just spent $60 to hear that I was worrying too much and that Apply Juice was the cure-all. (What is it with Apple Juice, anyway?)

We ordered our food and sat down. Shortly after we had sat down in our booth, two men sat down in the booth behind us. One of the men immediately started praying over his food, asking God to bless his food and to give them grace and wisdom. I was immediately encouraged by a prayer that was for someone else's food and someone else's life. I'm not really sure why the prayer lifted my spirits. Perhaps, it was a reminder that God has a hand in all this.

I was also reminded that I don't pray over my food in public very often and that it could be a blessing to someone else to do so. I just never realized that praying in public could bless a total stranger who might hear it.

I'm trying to see the blessings in each day. Some days it is hard to find those little blessings, and other days it is quite obvious.

Tuesday, April 21, 2009

Tying the Pieces Together, Part 1

This is day 2 of a very long week which followed another very long week in a very busy month. We have been taking Snugglebug to specialists of all sorts. If we haven't been to see a particular type of specialist, it has been recommended. We have also been drawing blood for different tests all in hopes of tying all the odd pieces together.

I have mentioned Snugglebug's battle with constipation, but he is also very small for his age. He is in the 1 percentile. We have a friend who's 6 month old is the same length as 14-month Snugglebug. He has delayed motor skills and delayed speech. In both areas, he is around average for a 9 month old.

We began physical therapy with him last week in hopes of getting our 14 month old mobile, and we are looking into speech therapy. After much discussion with our pediatrician, we decided to try to pull all the pieces of the puzzle together, and she started booking specialist appointments for us.

One of the specialists was a geneticist. She called yesterday and said she had found something. She asked that my husband and I come in to see her without Snugglebug in tow so we could discuss the results at length.

Our minds are racing with the possibilities. The fears that lie with a genetic disorder are huge! My husband and I spent a great deal of time on the phone last night discussing what it could mean for us and for our little guy.

Thursday, we see the Geneticist and will learn what is in store for us. We still have a gastroenterologist and possibly an Endocrinologist to see. So we may unearth even more causes for his various symptoms.

Saturday, April 18, 2009


I was posed a thought provoking questions this week. The question was "what is your least favorite thing about being a mom?" I wasn't sure how to answer this question. I certainly did not want to answer by saying, "everything." But, at the same time I didn't want to put my laundry list of dislikes: getting up at all hours of the night, never getting eight hours of sleep, snot, a messy house, and oh, did I mention snot. Instead, I rambled on about how hard it was to balance...blah, blah, blah.

But after thinking on the question for several days, I realize there is one thing that strikes me as the most difficult part of motherhood. Disconnection.

Prior to being a full-time stay-at-home-mom, I had a job with a co-workers, a paycheck, weekends off, and specified holidays. All those things are great! I especially liked the specified holidays where I only had to worry about getting to and from grandma's. Now, getting anywhere on a holiday is about like trekking through the woods with a basket full of goodies. It is very difficult to make with everything intact. (Oh, the paycheck was nice, too.)

But, I digress, co-workers are such a vital part of life. You have a relationship of some sort with these people you see on a daily basis. You go home, live you own life, and come back the next day. You stand at the water cooler and share about the happenings, or perhaps a hit TV show that everyone is watching, or a bewildering news story. Even the people you don't necessarily like are connected in some way. Perhaps you can't discuss work issues without a confrontation but you both love Grey's Anatomy. You are connected.

Being a stay-at-home-mom is a very disconnected job. I have no co-workers, no one to share those interesting tidbits or to discuss my favorite show. And even though I have great girl-friends who are reading this blog, and even though we share the same type of job, there is still a bit of disconnect. The permanent tethering of this child to you prevents you from doing all the things that create such great camaraderie as you have in co-workers.

Twice in the last month, I had to cancel a play date with a friend who has a daughter Snugglebug's age due to illness (ours). I joined a mom's group and would have had a meeting with them today but it was cancelled due to weather, but I would have missed it anyway since I was taking Snugglebug to the doctor for bad chest cold. So, despite my efforts I am disconnected.

I am taking steps to change the disconnect. I have joined a mom's group and am trying harder to get together with my dear friends who are also moms. But, the transition from seeing co-workers on a daily basis to being home all day with one who speaks in mono-syllables is a difficult transition that no one warns you about. There is no water cooler at this new job. Thus no water cooler discussion.

I am also discovering there is a strange disconnect within myself. The person who once held a job and had co-workers must now redefine herself not as a co-worker but as a mom. How does one do that? I have realized after reading Scott Hamilton's Great Eight that I must perform a new routine. In my quest to live and think positively, I must first redefine the life I wish to live.

Interesting, isn't it, how one quest leads to another? I am still pursuing my quest to live positively, but now am on a quest to rediscover myself, my life, and my "co-workers" in this business of motherhood.

I'm not real sure what I will find on this quest. I doubt that it will be dragons, but it will still be an adventure.

Tuesday, April 7, 2009

Poop Is Good!!

So for the last three weeks, I have been battling constipation with Snugglebug. Seems our eating issues were directly tied to the lack of poop. Poop, or the lack thereof, has been an issue since he was about 3 months old (and only on breastmilk) and has gradually gotten worse.

Now at 14 months, he is taking enough Miralax to make a grown man poop constantly for an entire day. (If you know what I mean!) I have made so many calls to my doctor's office that the nurses don't return my calls anymore. The doctor is just now realizing the seriousness of the constipation and is starting to take me seriously.

We have spoken to a dietition who confirms he is getting enough liquid and fiber. So the idea that he has a bad diet that is contributing to the issue is not the case. Hear that nurses! (Not a generalization only the ones who are tired of hearing my voice on the voicemail.)

We have run blood tests which may indicate maybe a slight Hypothyroid, but they want to run the test again, which is a problem. The constipation is so bad that it is now causing dehydration. Wow, you mean there is a cause and effect situation going on here. My doctor wasn't sure when I spoke with her about it. It all makes sense, but "surely he isn't dehydrated" the doctor said. "Surely, he is," I said.

We have a passle of doctors lined up this month to determine the problem. Poop is just too important to be ignored. Unlike some who cringe at the thought of poop. I get all excited when that rank smell wafts through the room. And typically, dissapointment follows an empty diaper and the realization it was only smelly gas.

Poop is good. Poop is a way of life! So next time you hold your breath for that smelly diaper remind yourself, poop is good. It proves everything is working the way it should. So, let there be poop!!!

Sunday, April 5, 2009

Read and Share DVD Bible Vol. 1

From Thomas Nelson, the Read and Share DVD Volume 1 has 13 Bible stories beginning with the story of creation and concluding with the parable of the lost sheep. The selection of stories is typical of any preschool Bible and is told with the same level of accuracy. The details are simple but well presented for little minds to grasp the concept.

The animation is very simple and could possibly be considered archaic. Computer animation has come so far that it is surprising to find this DVD to be so simple in its animation and graphics. If your little one is used to Veggie Tales or Baby Einstein as Snugglebug is, then your child will likely find this DVD to be uninteresting.

Most of the stories are narrated and sound like the are being read straight from the Bible which is a good thing, but today's little ones are used to the story playing out before them not being read to them from a television.

Considering this DVD is the same price as most Baby Einstein videos I would expect the DVD to much better quality. I am happy to play the DVD and have the Bible stories in the background, but Snugglebug will certainly not be sitting in front of the television absorbing the words as he does with Baby Eienstein.