Update on Anna's Immunology Appt.

For the sake of keeping a record of this journey, I've chosen just to copy the emails I send out after each appointment onto the blog! So if it sounds familiar....it is!

Hello All - Anna had her appointment with the immunologist today and the doctor is not overly concerned about her at this time. 10 more viles of blood were taken and some of it will come back rapidly and others will take 4-6 weeks. At this time, we are praising the Lord that she does have T cells that fight infection, we just don't know how substantial her count is yet. The main test will grow a culture in her blood to determine how well the T cells do their job and what we're working with. So for the next 6 weeks we will do our best to keep Anna out of situations where she could come in contact with "bugs" i.e. mall play areas and sadly church nursery. I am blessed with a family that is willing to chip in and watch Anna on Sundays so I can make it to service or small group and not feel isolated!

The other positive thing that happened today is we met Anna's new speech therapist. Our former therapist couldn't coordinate with our schedule so arranged for this therapist to come several weeks ago. The Lord's timing couldn't be more perfect, this therapist is an expert on speech appraxia and even started a local support group for parents whose children have appraxia. I was thrilled with her this morning and she is not ready to give Anna the diagnosis of appraxia and told me of so many other possiblities for Anna. She made me feel very confidant that we will do whatever it takes to catch Anna up with as little frustration as possible!

So you can probably tell my tone is a little different today. I know we still have lots of opinions to gather and we can't see the whole picture yet, but for today we are praising the Lord for good news and positive feedback. Thank you all for your encouraging emails and calls last week. So many of you ministered to us in so many ways! We are still taking it one day at a time and realizing that the Lord's timing is always perfect.

One last thing, Anna's palate surgery has been scheduled for October 29th. Again, I would like it sooner, but know that the Lord's timing is perfect.

Take Care,
Jen

New Traditions....Papa Joe's Pride and Joy

As many of you know ODU kicked off a new era of Football this year. Papa Joe has been excited about this for 2 years and I think I can honestly say, he was even more excited because he had 2 cute cheerleaders to show off. Erin and Anna love to be in their ODU outfits cheering the team on. I don't think Anna will go to many more games as she is a handfull, but she loves to clap her hands whenever the crowd gets really excited. Erin is convinced that her cheers have led the team to both of their victories.

It is a lot of fun as I never experienced the whole college football hoopla of tailgating and screaming at a team. Plus, we get to sit next to our good friends the Jacksons which is always a fun time! So here's to a great kickoff season for ODU with 2 of the cutest cheerleaders on the block!

Growing Up and Going Up!

The girls are growing up and since our family is expanding we decided to make room for our newest girl! Anna has successfully been transferred to a converted crib, although I did add a small rail to keep her in at naptime(little stinker). Erin's room is being transformed into a princesses castle built for 2. We fell in love with these bunk beds and since we know they will be used for years to come...we couldn't say no. Erin has adjusted very well to sleeping on the top bunk. We plan on moving Anna in November after she's had her surgery. Although she is very anxious to be in there now and Erin is anxious to have her. It's exciting and sad all at the same time, but I guess they have to grow up - it's just what they do!

Update on Anna

Well - it's been a long day. We spent 3 hours at CHKD this afternoon speaking with several doctors, specialists and counselors about Anna. We left feeling a little overwhelmed, but on the right track. At this point, the geneticist strongly believes Anna has VELO CARDIO FACIAL SYNDROME, a chromosomal disorder dealing with the 22nd chromosome. Bloodwork is likely to confirm this diagnosis within the next week. What does it mean now that we know this? Anna has a long, uncertain road ahead of her. This syndrome can manifest itself in so many different ways that we won't know exactly the difficulties she will face. She is being referred to a urologist to check her kidneys, since kidney function can be affected, she is being referred to an immunologist, since her immune system can be affected, she is being referred to an endocronologist, since her calcium levels can be affected. There are so many "ifs" or possibilities that it is just best to have her looked at by everyone to rule out the major issues that could present themselves. From the research we've done, VCFS patients can live a highly functional, "normal" life, we just may have a few bumps in the road, but the cardiac and palate issues are the most major, so at least we are getting them out of the way!!!

On to the palate issue - Anna has a submucous cleft palate. The surgery was explained to us and appears to be fairly simple. The discussion that is on the table is the appropriate time to perform the surgery. The Speech Pathologist feels Anna has a severe speech delay due to another underlying cause (probably VCFS) not just the palate issue. She, the ENT and the surgeon must now decide whether to do the surgery immediately or allow Anna to be in more aggressive Speech Therapy 2 times a week and do the surgery after she shows improvement. They will discuss the options over the next few days and let us know the best course of action for Anna.

I know that is probably very overwhelming information and if you ask me, what can we pray for, I'm not even sure what to answer. Pray for the road ahead of us. It just got a lot longer than we anticipated it being. Pray for protection for Anna with the upcoming cold/flu season as she is so susceptible to "bugs." Please pray for me to be strong and to have faith that God's timing will be perfect and that I can take it one day at a time. I will not lie and tell you I'm doing "okay" with all of this. I feel very overwhelmed, mostly due to the fact that I have another baby on the way. I feel like the next 4 months with Anna are crucial and I would like some "normalcy" to be in place when the baby arrives. But I can't control any of that, I can't make it all go away, I just want to have faith in the Lord's timing and will. I keep telling myself that He knows we can handle this, that's why He's chosen us.

Thank you for being a support for our family and for loving Anna so much. I know she can't tell everyone how loved she feels, but one day we'll tell her how loved and lifted up she was!

As always, I'll keep you posted!
Trustin in HIm,
Jen

Did he just say that....

Yesterday I had my 24 week appt. which was very uneventful. Weight check, measurement check, heartbeat check - nothing exciting(yes, the heartbeat is always exciting)! However when I asked the doctor about the constant pain I've been having in my lower abdomen and the back pain in the middle of the night, he says, "Well, it is your third pregnancy and you are OVER 30!" I couldn't believe he pulled the 30 card on me. My best friend and I agree we still don't feel any different than we did at 25, shouldn't our body just go with what our mind says? I wonder how Michele Duggar's body feels right now!

Budding Artists

Erin is an art loving girl, and I think she's having an influence on her younger sister. Whenever Erin is doing art, Anna wants to join in. Yesterday, I was having Erin paint a canvas for our bathroom, something she is going to do every year, and of course Anna had to join in. I wish I'd had a baby canvas for Anna, because I'd love to hang hers as well. I still may frame it and hang it somewhere. You can't beat reasonably priced treasures like these!

Erin's masterpiece - a sunset

Anna's masterpiece - a garden of colors

Erin's first day of Kindergarten

Our Little Kindergartener!

One cute little Erin with a Princess backpack!

A teary goodbye.

A future Seahawk!

Celebrating a great first day with our free birthday meals at Silver Diner!

Our baby started K-5 yesterday and I just can't believe it. She was very excited about it before we arrived at school, but quickly became anxious when we got there. Daddy was persistent that we not hang around, but make a quick exit to make it easier on her. I know he was right, but it sure was hard to leave her in tears. Mrs. Mulford said she did great and only had a few tears throughout the day. What a big transistion for a little girl, but I know she is going to love school. They go to art today and I think that will seal the deal. There was no shortage of details about her day yesterday, from who lost a bear to what they sang in chapel, we got a full recap. I'm so thankful that she is in a warm and caring place that I'm very familiar with. It is very surreal to be taking my own child to the school I went to and taught at, but very exciting for sure!