Update on Jennifer

It has been a very busy week around here. We are preparing for Jake's 4th birthday party on Friday. Time to celebrate with all of his friends! Thankfully my sister, Karen, came in town yesterday to help me pull everything together. She brought her two boys, Ryan and Ben. Even with the crazy, daycare like atmosphere around here, we are still having a great time. My other sister, Kathy, will be in town with her two girls tomorrow evening. The chaos will grow! Hard to believe that is even possible but I'm sure we will continue to have a great time together.

This family support has also been wonderful to have this week for other reasons. On Wednesday I went to my follow-up with my Rheumatologist to go over all of my lab results. We didn't receive the news we were hoping for but know that God is in control. I've been diagnosed with Lupus. We will be doing more tests to determine if my heart or lungs have been affected at this point. It is our prayer, of course, that I only have joint damage and nothing else. I will go back to the doctor in 5 weeks. I am beginning three different medications and we hope to see improvement in my knee and other symptoms.

This diagnosis seemed to be much harder for my loved ones to hear than it was for me. I feel that God had prepared my heart and has provided me with a great, abiding peace. This may sound strange but I actually felt relief when I heard the word Lupus. It wasn't that I wanted to hear it, by any means. I just felt peace in my heart. I have been struggling with not feeling well for several months now. It has been very hard to feel so incredibly tired and to feel like my body just wasn't doing what I wanted it to do. I felt frustrated by it and felt like I was failing my husband and my children. I would have many days where I would have dizziness, nausea, headaches and extreme fatigue. Aaron would come in and I could always tell by the concerned look on his face that my outside was matching how I felt on the inside. I would be really pale and look completely washed out with really dark circles under my eyes, even after 8-10 hours of sleep the night before. This past winter I kept thinking I was always getting the flu but it never turned into anything. After a while I began to question my own sanity! I have been blessed with an amazing husband though. He provided me with so much strength. He would just wrap his arms around me and always showed me incredible love. I know he was frustrated that he couldn't fix the problem but he never failed to be there to help make it easier. I am just so thankful now that we know what we are dealing with and we can find medication that will help make it better. I feel great relief for myself and also my family. I know that God's amazing grace and the hope that He has given me will lead me all the way. Thank you so much for your prayers. I continue to appreciate all of your love and support. It means the world to me and Aaron. Please continue to keep us in your prayers. I will keep you updated!

Here is a brief description of Lupus for those who may not be familiar with the disease...

Lupus is an autoimmune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain. Normally the body's immune system makes proteins called antibodies, to protect the body against viruses, bacteria, and other foreign materials. These foreign materials are called antigens.

In an autoimmune disorder like lupus, the immune system cannot tell the difference between foreign substances and its own cells and tissues. The immune system then makes antibodies directed against itself. These antibodies -- called "auto-antibodies" (auto means 'self') -- cause inflammation, pain and damage in various parts of the body.

Fun with Friends!

Yesterday, we found a great new place to take the kids! Williamson County has built a new recreation center in Spring Hill. One of the amenities is an outdoor pool and a large area of it is geared towards children. There are slides and waterfalls, enough to keep them busy for hours. (That's all I need to hear!) The pool is zero entry, which I love. It was perfect for me and Gracie. She sat with me in about 3 inches of water and just splashed her little heart out. My great friend, Tiffany and her daughter, Addie came with us. Addie has quickly become one of Lauren and Jake's favorite friends! They had a really good time and something of equal importance for the moms...they left exhausted! I think we will definitely be planning a second visit soon.

Girl Time!

Bathing Beauty!

Family Fun

We had a great reason to celebrate this past weekend. Jake turned 4 years old on Sunday, July 13th! I can't believe my little man is four!! He is growing so quickly and I just want to freeze him in time! He is so much fun and can melt my heart with one glance. I took some pictures over the weekend. Some of them are from Sunday, when Jake was opening his presents and others are just pictures of fun at home. My mom always tells me to savor these moments and that the years when my children are young will be some of the best years of my life. I can see what she means. It just gets better and better!

Let's get this party started!

Jake gets a Leapster!

Gracie and Daddy watch the fun!

I laugh at this picture every time I see it. I had been trying to capture a smiling picture of Jake but he kept closing his eyes in every shot. I said, "Jake, smile and try not to close your eyes this time." This is the one I got. He certainly did what I asked of him! You can see how hard he is concentrating to keep those eyes open.

Gracie has fun playing ball with Mommy!

Look at that sweetness...

"I'm almost ready to crawl to you, Mommy!"

Lauren, a professional present unwrapper, is ready to offer her services to Jake at any time!

After a great time of worship at our church, a wonderful birthday lunch with our close friends, and the excitement of unwrapping Jake's presents, Gracie and Mommy head off for a nap!

Just For Laughs...

Many of my recent blogs have been a little on the heavy side, so I thought I'd lighten it up a bit! Now, it's no secret that Aaron has had his share of speeding tickets over the years, so this joke gave us a great laugh! He may have to try this tactic next time...

A police officer pulls a guy over for speeding and has the following exchange:

Officer: May I see your driver's license?
Driver: I don't have one. I had it suspended when I got my 5th DUI.
Officer: May I see the owner's card for this vehicle?
Driver: It's not my car. I stole it.
Officer: The car is stolen?
Driver: That's right. But come to think of it, I think I saw the owner's card in the glove box when I was putting my gun in there.
Officer: There's a gun in the glove box?
Driver: Yes sir. That's where I put it after I shot and killed the women who owns this car and stuffed her in the trunk.
Officer: There's a BODY in the TRUNK?
Driver: Yes, sir.

Hearing this, the officer immediately called his captain. The car was quickly surrounded by police, and the captain approached the driver to handle the tense situation.

Captain: Sir, can I see your license?
Driver: Sure. Here it is.
It was valid.
Captain: Who's car is this?
Driver: It's mine, officer. Here's the owner's card.
The driver owned the car.
Captain: Could you slowly open your glove box so I can see if there's a gun in it?
Driver: Yes, sir, but there's no gun in it.
Sure enough, there was nothing in the glove box.
Captain: Would you mind opening your trunk? I was told you said there's a body in it.
Driver: No problem.
Trunk is opened; no body.
Captain: I don't understand it. The officer who stopped you said you told him you didn't have a license, stole the car, had a gun in the glove box, and that there was a dead body in the trunk.
Driver: I'll bet the liar told you I was speeding, too.

2 Corinthians 12:9, "His grace is sufficient for me, His power is made perfect in my weakness."

It has been a difficult two weeks here and I can't tell you how blessed Aaron and I feel by the love and support of our family and friends. The outpouring of prayers have been incredible, so a big THANK YOU is my first order of business in today's blog. I can not tell you what it meant to receive your calls, either to offer help with the kids or to just listen and pray with me. We believe prayer is powerful and so a special thank you to my wonderful friend, Rachel, who "stormed the gates of Heaven" with her prayers. You are all such a blessing.

For those of you who may not know all that we have been dealing with these past two weeks, here is a quick update. On June 18th, I wrote a blog about Gracie and our concerns for her, specifically the large tongue and the possible underlying issues that could be behind it. To make a long story short, we are having Gracie tested for Beckwith-Wiedemann Syndrome. (For a brief description of this disorder, you can go to the following link http://www.bws-support.org.uk/html/what_is_bws.html). We had an abdominal ultrasound last Thursday and received a wonderful report. All of Gracie's organs are of normal size and there is currently no tumors present and no defect of the abdominal wall. We give God all the praise for that great report! Unfortunately, we are still not able to rule out BWS but we are thankful that we are not currently dealing with any tumors or organ involvement. Children with BWS must undergo cancer screenings every three months until age 8 because tumor development on the kidneys and liver is a heightened risk and continual screening allows it to be caught at an early stage. We are scheduled to see a Geneticist at Vanderbilt on August 1st to undergo more testing. It is our prayer that Gracie does not have BWS and that her macroglossia (large tongue) is just an independent issue and that her other mild BWS symptoms could be explained away by other things. No matter what happens, we are placing our complete faith in God and know that His grace will carry us through anything.

That brings me to our next issue! Many of you who have known me for a long time know that I was diagnosed with Juvenile Rheumatoid Arthritis in my childhood. This caused me occasional pain and joint inflammation in one or both of my knees. I have seen Rheumatologists for years and have been monitored closely for any other autoimmune disorders. (When you have one autoimmune disorder, you are at increased risk of developing another later in life.) About 4-5 weeks ago, I began having joint symptoms in my knee. I did what I typically have done for years whenever this happens, rest when I can, elevate knee, ice, heat, NSAID medication, etc. Despite all these efforts, my knee worsened. I was unable to walk on it and went in to see my GP. He drained the fluid from my knee and gave me a steroid shot in the joint. This is my absolute least favorite thing to do...ever! I handle epidurals during labor better than this procedure! It is so painful that Aaron even offered to take me anywhere I wanted to go afterwards for a "treat." The "treat" I chose was a nap! We were all assuming that I was just dealing with an arthritis flare associated with my JRA but a few days later, the blood work that was done at that appointment came back and was a bit troubling. We realized we were dealing with something new. I have been tested for Lupus many times over the years and the initial screening test for these types of autoimmune diseases was always negative in the past. However, this time it was positive. We were referred to a Rheumatologist at Vanderbilt and had an appointment this past Wednesday. Right now we are looking at the possibility of Lupus, Lymphoma, or something out of long list of autoimmune diseases. More blood was taken and a battery of tests are being run and I return to the Rheumatologist on July 22nd for a more definitive diagnosis.

These past two weeks have been a real test of faith for me. I have been reminded of a lot of things, like how easy it is to praise God in the good times. Praising him during the bad times can be harder but the reward is great and I am taken to a deeper level of faith. It is so exhilarating to watch God bless our lives each day through the good times. I have had many days like that. I have also walked through some mighty tough days over the past 3 1/2 years and during those times of darkness, I always reminded myself to look for the light. I knew it was there and I did not want to forget to praise its presence during that time. We are to praise God in ALL things. It is easy to say, not always easy to do. For me, it takes reminding! Another great lesson God is teaching me began when I was talking to Tiffany, a great friend God has blessed me with here in Nashville. She and her husband have been walking the extremely heartbreaking road of infertility and she said three words that ministered to me in a way I will never forget. I asked her if she ever had the "Why me?" moments, a thought I had been wrestling with this past week. She said, "Why not me?" God used that as a real teachable moment for me. We all go through times of suffering. As believers, we are not exempt. In fact, God uses suffering to perfect us in the likeness of Christ. God does not allow for suffering as punishment. I believe suffering is an essential part of life, so that we may see fully the measure of God's grace. Paul says in 2 Corinthians, "We share in His sufferings in order that we may also share in His glory." There are so many heart-wrenching situations that people are faced with every day. In Aaron's job he cares for the tiniest babies, many of them so ill that they may never make it home. The agony the parents must experience is heartbreaking to me. I praise God that I haven't been faced with the unbearable pain of losing a child. God has protected me in numerous ways and I am so thankful. I have prayed for peace and God has given that to me, along with a few life lessons! Well, I'll end this incredibly long blog (if you have read it all, you are a dear friend!) with some favorite scripture...Romans 5:1-5, "Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us."

Lauren's Dance Recital

We had a very special event this weekend! We had the joy of watching our little ballerina in action. Lauren's dance recital was Friday night and she was absolutely precious. We were not allowed to video the performance because the dance studio was having it professionally recorded for sale. They were only allowing photographs to be taken without a flash. My digital camera gives a video option and so I was able to sneak by and get this video of Lauren's tap dance. Forgive the quality though, it's not the best but I was excited to just be able to get something to share with our family and friends. I hope you all enjoy seeing it and please feel free to leave a comment. I will share them all with Lauren.

Looking for answers...

I love having three children. They are the loves of my life. I even consider myself a fairly "seasoned" caretaker of young children at this point. I know how to handle their day to day care, their illnesses, temper tantrums, feedings, diaper duties, developmental milestones and the list goes on. No matter how well-equipped I may seem, the one thing I do not handle well is the "What if...?" question. Whenever something abnormal arises (i.e Jake's nystagmus) in one of my children, I immediately fear the worst. Thank goodness I have my very own baby doctor to run to with all of the fearful questions. The #1 rule Aaron has set in place for me is that I can't go self-diagnose on the Internet. I broke that rule this afternoon but I feel like I censored my search well. I didn't immediately jump to the worst diagnosis possible and call him crying. (I may have been guilty of that in the past, so you see, I'm getting better!) To my surprise Aaron actually enjoyed the research I had been doing and agreed that we are dealing with an issue that needs further investigation. Now to explain the problem that needs answers...

I look at Grace and see the most beautiful baby in the world. She has completely stolen my heart, just as her sister and brother did when they were babies. No abnormality Gracie has will ever change the beauty I see when I look at her. I know all mothers feel that way and so some times it is hard to open ourselves up to the thought that something may not be quite right. I have been amazed at the motherly instinct God sets in motion at the moment of conception though. I am very grateful for it because it has helped me be cognisant of an abnormality in Gracie's mouth from the day after her birth. Having had two children before, I was quick to realize that something was different. Gracie's tongue was protruding from her mouth all of the time. She did not seem to ever completely close her lips around her tongue. I talked to Aaron about it early on and he acknowledged that it was different and said we should just keep our eye on it. Gracie's pediatrician told me the same thing. Now, six months has passed and I am more aware of it than ever before. I have been told that Gracie will outgrow it and that while it does go along with several syndromes (Down Syndrome, BWS, etc.), Gracie has no other accompanying symptoms that would lead to a positive diagnosis of one of those illnesses. Now here comes that motherly intuition. I've been told to "wait and see" but I've had concern all along that it was going to cause problems when we try to introduce solid foods. Sure enough, we have reached the 6 month point and Gracie needs to be able to spoon feed solid foods at this age. She is having difficulty due to the the positioning of her tongue. We get a little bit in her but most of it winds up on her bib or on me. I called the doctor again and we have an appointment June 28th. I'm not leaving there until I have an answer or at least a plan in place. I can handle any problem with one of my children but I have to have a plan of action set in place. Once I know what it is and know how to handle it, I can return to a peaceful state of mind. I hear enough stories from Aaron's work in the NICU to be thankful that I'm just dealing with a tongue issue and not something life-threatening. His job really gives us perspective. While I would love for my children to never experience pain or discomfort of any kind, I know that is not possible. I can only vow to be their greatest advocate for their health and never fail to pray for God's intervention.