Our family is growing in many ways... Growing in numbers, knowledge, parenting skills, growing in love, in our faith, growing our culinary skills (if you can call it that), growing without gluten (some of us), growing green...........

Friday, November 21, 2008

Sleepy Time

Lately Aiden has been sleeping at night wonderfully but struggling with his naps. I got this book, which I think is GREAT. Lots of common sense stuff, but let's face it, sometimes even common-sense things get overlooked or forgotten and we need reminding. But there is also a lot of other good stuff in there. And it's not a plan to just follow - it's about coming up with a plan that fits your individual family, deciding if it's working, and tweeking it every so often if needed. (We're not all about the cry-yourself-to-sleep method...that's just not for us.)

Before all this, Aiden would nap after nursing, sleep for about 20 minutes, and wake back up still tired but wanting to nurse again. Sometimes he would sleep for up to two-and-a-half hours, sometimes only the twenty minutes a few times a day. It would vary each day, which was frustrating for both of us. He needed the sleep, I needed the time to do stuff around the house. Something had to change, and I wasn't going to do it by letting him cry it out. Enter the book. Thankfully it was a quick read and had things I could start using right away. :) Otherwise, how would you find the time to read on ways to help your baby sleep - if your baby never slept! Hmmm..... We didn't need the book for bedtime - that's easy for now. We do have a better routine, and he goes out even quicker than ever! But our focus was naptime.

So, I decided to alter Aiden's naptime schedule a little bit, and WOW has it made a difference! It's not much, but it works. At the very first eye-rub, yawn, or anything to indicate he is tired (if we are home and I am able!), I take him into his room, we sit down with his little stuffed bunny (that only comes out at naptime and during the day) and a book, read, then he goes straight to the crib with a paci (which he just started taking two weeks ago today!), and we turn on our sleepytime music. The child goes right to sleep (well, ok, not every single time - but 9 out of 10 he is out within just a couple minutes) without fussing at all.

Aiden napping with his little bunny

We're still working on sleeping longer without waking and needing to nurse or get his paci. But that will work out in time. He's already getting better at it. Naptime is just working so much better these days, though. He's happier, mama's happier - it's a win-win. :)

Side note: Aiden did go through a week of starting to wake every couple hours at night - but we think he was going through a growth spurt b/c we could tell he was just HUNGRY! And he's getting back to where he was - almost there!

Monday, November 17, 2008

Aiden's Medical UPDATE

If you haven't read about Aiden's medical issues, you can learn about it all here. Otherwise, this won't really make much sense.

We went back to the dermatologist at Duke last Thursday. After getting the results from the geneticist, he told us we could relax some and not worry so much. Not so bad to hear after all the drama we've been through, huh? Now, I am the kind of person that likes to have answers. I like to KNOW things. BUT...I figure if two specialists at Duke can tell us that we can relax a bit, then we can assume they are right and do just that. If it does come back, we know who to call to and what the next step will be. But for now, we (for the most part) have a clean bill of health. That's nice! There are obviously some unknowns still, but aren't there always? We'll deal with other stuff as it comes up and be happy with what we currently have in front of us.

We did come away with a diagnosis of eczema, though. I knew this going into the appt, but I like to have confirmation from a medical professional. :) He gave us a prescription for some spots that were really affected - such as one of Aiden's birthmarks. Apparently birthmarks can really get the brunt of eczema.... And he recommended this lotion, which is not cheap but feels soooo darn good. The first time I massaged Aiden with it, he just grinned the whole time!! So, it might just be worth it. And his skin feels so soft now after using it regularly. Camden has mild eczema but I doubt he will start using this... The only time he wants to bother with lotion at all is after swimming (b/c he KNOWS that can break him out big time).

So - good news in our home! We are happy with the results for now. And we have been reminded what a blessing it is just to have this little boy in our lives. That is a lesson we won't be taking for granted. :)

Sunday, November 16, 2008

THE Santa Talk

I've never been a huge fan of encouraging Camden to believe in Santa. In fact, it's always been a source of tension for me. Why? Because I want the focus of Christmas to be on the real "reason for the season" - the birth of Jesus. And Santa kind of conflicts with that... In my opinion. So, while I've never really discouraged his belief, I've never really encouraged it, either. Sure, Santa has always brought him a couple things (but not much), and we have on occasion put out milk and cookies, but that's about it. I spend my energy on trying to teach Camden about the spirit of giving (not getting...) and about Jesus. I have been waiting and waiting for him to ask about Santa b/c I have a policy of not lying to him (which is just another reason I don't like this whole pretending that Santa exists thing...). So, he FINALLY asked. We were running errands, so we talked briefly (I did the whole "What do YOU think?" when he asked if I believed Santa was real) and told Camden we would discuss it more at home.

What led to this discussion is him bringing up The Polar Express movie and wondering about the boy who said Santa hadn't visited him before (the poor boy in the movie, not the main character). He wondered if Santa really didn't visit some kids or what that was really all about. So, we sat down with Camden last night, armed with brownies and ice cream (ok, that was more for me...) - and it all came out. (I am SO relieved!) I expected him to know what might be coming since we put off the discussion until we were at home and since we asked him "If Santa weren't real, would you want to know?" (To which he answered yes.) But he didn't put two and two together until we outright told him. We explained where the idea came from, who St. Nicholas was, etc. At first he was a little mad that parents lie to their kids about the whole Santa thing (which I totally get). We explained many of the reasons that parents pretend about Santa, and I think he got it. We looked up more about St. Nicholas, and he was really interested in the truth behind him, which was pretty cool.

But what was he REALLY upset about?? The same thing from earlier the same day... When he first brought up the whole "poor boy thinking Santa forgot him" - he got really upset and was crying. He thought it was awful that some kids would feel that they got overlooked by Santa. And this was still bothering him. He was upset about this all night - about the kids who get so little or nothing at all. Now, he doesn't get much either. Part of it has been b/c of money, yes. Being a single mom in college - you don't have a lot to spend. But I also don't agree with splurging even if you have it - kind of takes away from the real meaning. But back to the story... He hated realizing that some kids really don't get much and that they might think that Santa just didn't stop at their house. He thought it was so sad and felt really badly for those children. He was upset all night and had such a hard time going to sleep.

I reminded him about how he gives to a child each year to help with this. At his school, they have a "Dolphin Tree" (their mascot is a dolphin), and he picks out a child and buys them a gift with his own "charity" money that he has saved up. I explained to him that while it is sad that many children are worse off, instead of focusing on what they don't get and simply feeling sad about it, it is better to do something and try to make it better for some. So then he got upset because we only signed up for one child this year. When I told him we could do more, he was upset b/c he didn't have enough money in his charity money for this. I explained we could help with that. I mean, this is the point I want him to get!! And he's getting it. Regardless of how much or how little we have, I want him to learn to give to others and consider those less fortunate - and not just to consider them but to DO SOMETHING about it.

I love that my child has such a big heart. It nearly broke my heart seeing him so very upset and crying over children he doesn't even know, over a character in a movie. He kept wondering why they would put such a character in the movie b/c it is too sad. And I think this is one reason why. I'm so proud of Camden right now. We had such a great talk, and I'm glad that the biggest thing that came from it has nothing to do with finding out that Santa isn't real but that it has to do with caring about those less fortunate. I had many "proud mama" moments last night.

Oh, and when asked if he thinks we should teach Aiden whether or not there is a Santa, Camden thinks we should not. This is another reason we have wanted Camden to find out - b/c we weren't sure we wanted to keep it up and teach Aiden there was a Santa. It's nice to have the opinion of a child that just found out b/c, honestly, I forget what I felt when I first realized it. Sure, we can still have fun and pretend, but I would rather my children have a little fun with that while focusing on what Christmas is really about. Like Camden said, "so that really is why it's called Christmas - CHRIST!"

Friday, November 14, 2008

Road Trip!!

Haven't been on to blog in a while... We've been pretty busy! This past weekend, we took a short road trip - Aiden's first!!

We drove up to KY for the Berea College Homecoming and to visit with some of my girlfriends. It was a jam-packed, hectic weekend, but it was also a lot of fun! Aiden did really well on the car ride. We stopped on the way to spend the night at MaMaw Sharon's (it was already after 11pm when we got there since we left after Camden got out of school), then onto KY the next day to visit with some friends at Mammaw Melly & Pappaw Gene's house. My closest girlfriends were all there with their little baby boys. We all have boys born within 11 months of each other! And Sonia's older son, Justin, is the same age as Camden. Talk about good timing, huh? It really made me miss being in KY b/c it was not only great being around them - but it was so wonderful to have all the boys together!! While there, my brother, his wife, and their kids stopped by to meet Aiden, as well.

Joaquin and Aiden meet - I love how Aiden is just grinning! They'll be best friends just like their mommies are!!

Patsy w/ Joaquin (6 mos), Kathy w/ Johnathan (14 mos), Me w/ Aiden (3 mos), and Sonia w/ Christian (13 mos)

Baby group pic! :)

Saturday we spent the ENTIRE day in Berea. It was soooo nice being back there. Man, I miss that place! We walked around campus, saw some of my favorite professors (and didn't get to see a few others), saw a few friends (but didn't see nearly as many as I had expected), had lunch at Boone Tavern, dinner at Papa Leno's (take out, though), and visited the Ecovillage, where Sonia and I both lived for a couple years while at Berea. It reminded me how much I love Berea and how fortunate I was to go to school there.

A few of us at the Psych Alumni Reception

Kris - one of the best. professors. EVER.


A quick walk down to the Ecovillage to visit where Mommy & Camden used to live

On the way home Sunday, we stopped just to have breakfast with PawPaw Gary and MiMaw Susan. It was a quick visit and Aiden was pretty tired, but it was good to see them and break up the trip a little bit, too. Aiden wanted to stop and eat a little more often on the way home, but he still was quite the trooper! By the time we arrived back home, he and Camden were OUT!

Aiden never stays asleep while being taken out of the car seat or when being laid on the changing table... This shows how tired he must have been!!

Click on the album to see the rest of our pictures! We got a bunch of really good ones!
Nov '08 - Visit w/ Best Friends & Berea College Homecoming

Saturday, November 1, 2008

Aiden's Medical Issues

I will start by saying that this is a long post (long even for me). There is not a simple way to write this out without sharing what we feel are the important details. We have been through a lot during Aiden's first 10 and a half weeks of life, and we want to share it with you now that we have some solid answers. We have included as much information as we can so that you can understand what has been going on. We've tried to shorten it and make it simple and not too drawn out, but it is still a lot of information.

When Aiden was just 1 day old, we discovered some marks on his bottom near the base of his spine. (You may have seen some pictures on our online albums from when he was first born and still in the hospital.) The doctors there did not know what it was, so the dermatologists stopped by when they were doing rounds. They weren't sure - thought maybe a birthmark but wanted to do a biopsy, which we OK'd. We went back to Duke to see the dermatologist that next week (the spot was almost gone at this point) and received a diagnosis: incontinentia pigmenti (from here on out referred to as IP). This is a (typically) genetic condition and has many components to it - but mostly affects girls (and more harshly affects girls). It is a very rare condition - and even much more rare in boys. There can be a number of skin abnormalities, there can be severe eye problems, teeth problems, developmental and neurological problems... We were told that the good news is that most boys are limited to having the marks on their skin and that is typically it - this is what the dermatologist said he believed, at least. BUT we were referred to a geneticist to receive testing and confirm the diagnosis.

We got more information, though, from some family members. I have an aunt that is an OB nurse and one that is a family doctor. Through them, we learned more and were more prepared for what could be our reality with this diagnosis. From them and our own research we found out that there is a reason so few boys have this diagnosis - most do not make it through the pregnancy. For those that do, many times the reason they survive is b/c they have an extra X-chromosome (which would also mean they would have Klinefelters - causing them to be infertile). (Klinefelter's is NOT genetic and is completely random.) This was scary news for us, that our child might be infertile. It was hard to digest that something that could have possibly saved him and allowed him to be born could have this other result, too. We were warned that b/c so few boys are born with this condition (IP), there is little known about it with this gender. So we were told to limit his exposure to other people and wait until we met with the geneticist to proceed with any vaccinations - all b/c it is unsure how strong his immune system was until we found out more. (So...if you were one of those people that visited or saw us during Aiden's first few weeks, and you wondered why we held him so close and did not share, please understand this is why.)

We called the dermatologists again and asked more questions - especially asking how certain are they of this diagnosis (fairly certain due to consistencies with IP and the biopsy and the marks that were on his skin - only one other diagnosis was considered and the marks would have gone away sooner with that diagnosis). I had tons of questions, and the resident on the case was very patient and answered everything. It was reassuring that they were giving us the time - and that we had a dermatologist on the case that deals with uncommon conditions (esp in children). We also asked for (and recieved) a referral for an eye exam at Duke to check for any eye abnormalities (which can be a more serious problem with this condition and people are urged to be checked sooner rather than later - the eye problems can result in vision loss, so we didn't want to put the exam off!). That eye exam (at 3 weeks old) showed that his eyes were perfectly normal - good news for us.

This appt with the geneticist was first scheduled for November b/c she is so busy, but after repeatedly calling and asking (very relevant and important) questions, they were able to bump us up and overbook her - so we got in when Aiden was just 3 weeks! Thank God!!

At this appt, we went through a very intense family history creating a very detailed genogram of our family - including any known issues with developmental problems, miscarriages, births of boys (b/c remember that most boys w/ IP are miscarried and do not make it to birth), skin conditions, and a multitude of other possible indications of a family history with IP. (I mean, this took a LONG time!) Aiden had to have blood drawn - and a LOT of blood, the poor thing (a few regular-sized vials!)! That was hard on all of us... They did one test to look at the NEMO gene (yes, it's really called that - just like Finding Nemo...) to see if there were any abnormalities - that would indicate IP. They also did a chromosomal test that would show if there was an extra X chromosome. The results... due back in ONE MONTH. Thus began one of the hardest waits we have endured....

Aiden after getting his blood drawn. They drew soooo much - he had to be exhausted from losing so much. He looked so pitiful! :( It was a rough day!!

As you can now guess, this has been a very, very emotional and difficult time for us. We were worried about our son's present and future all at once. We did not know if he had this condition, how he got it, and what exactly it meant for him (b/c so little is known about boys with it). We have spoken with very few people about what we have been going through. Why? Because this is so sensitive and difficult for us, we did not want to be faced with a lot of questions (that we really had no answers for) or reminders. We talked with parents and a few close friends that would pray for us (and most did not know the details but just knew we needed prayer). We hope nobody is offended that we did not tell you about this. It is what we felt was right for our family while we waited for more answers.

Onto the answers - the ones we do have.

After a month, we approached the night before our appt with the geneticist. That was a hard night (and then a hard morning) to get through. LOTS of praying - that our baby was ok, that we could accept what lay ahead if he wasn't, etc, etc. LOTS. And lots of worrying and crying. I know that God has a plan for Aiden. He has it all mapped out and knows everything about his life. We don't know what that plan is, whether or not it includes this condition and the effects from it, but we prayed that we can accept what we do find out and follow in the path that God has set in front of us.

At the appt, we had to wait a couple hours before getting to see anyone, which made things even harder, caused the anxiety to build even more. When she came in, there was a man with her, which worried us a bit. He turned out to be the cyrogeneticist (he works with the labs and is there every so often to help explain lab meanings/proceedures/results, etc.). It was very helpful to have him there. They had lots to say, we had lots to ask. So - results... As soon as she said the word "normal" I started to cry. What a release! (Not necessarily relief - but just the release of all that anxiety built up!!)

One test was for IP - came back "normal," no mistake in the NEMO gene. This means (reality check here) that there is still a 20% chance he has the condition, BUT the 20% that doesn't show up on the test are usually very mild cases. He could also have a mosaic form of IP, which would mean that it would be localized (only occuring in the same spot he had the marks before) and it would also mean that it is NOT genetic! (That means it would have happened RANDOMLY, as it could have with any other person, at some point during the division of the cells during fetal development. It also means that we have no reason to worry about having other children with this - which was a valid concern, especially if we were to have a girl in the future.) So what now? Can we test for THAT type of IP? Well, if the spot were to return, we will contact the geneticist to come in while the spot is still there and do another biopsy to check for the mosaic form of IP. But there is the possibility that it will not return. And there is the possibility that he does not have IP. We also go back in a year for a follow-up to see where he is then.

Next test - chromosomal.... This also came back normal. Another reality check here - this was only one form of testing for an extra chromosome (blood test). There is another way to test - skin test. (Most other places do not go to this next step - they stop at the blood test, so we are very thankful that we are at Duke and that we got this other test performed b/c it will take us one step closer to an answer.) They did a buccal swab - they took a little toothbrush type thing and swabbed inside Aiden's cheek (no blood to be drawn this time!!!). This test was only to take a couple weeks and we would not have to return to the office for the results (which is nice partly b/c specialists visits are not cheap, and we're accruing quite a few here). Now, these are the two most common ways to test for the chromosomal abnormality. After that, there is an indefinite number of cell types to test!!! But first, this skin test. Even if it were to come back as positive for the extra chromosome - it would mean something different. It would mean that he would have a skin mosaicism form which means he could be infertile or could NOT be (basically, time would be the answer to that). Why? Because a mosaic form could occur at any point in the cell division of fetal development. For example, if it occurred at the 16th division, only the descendants of that cell (any other divisions on that string) would have this mosaicism. If one of those descendants had something to do with his sperm - then he could be infertile. But there would be the chance that it did not, leaving him able to have children. If the test were to come back negative - finding no extra X-chromosome.... Remember that I just said there is an indefinite number of cell types to test for this. You could test forever and not get a definite answer. BUT if it came back normal, we would be able to assume that Aiden has just as much of a chance as ANYONE else of being infertile.

We did not get the test results in the mail at 2 weeks later, as expected. (Though we did get a write-up of our first visit and read through the entire thing, anxious as can be, wondering where are the answers we are looking for! That was not a lot of fun...) After the third week was complete, we contacted the doctor to find out what was going on. She emailed us and stated that this test came back as normal and we could rule out Klinefelter's Syndrome. (We just got the paperwork with the write-up this week, so now it's in writing!)

So, we have some very good answers - no Klinefelter's, only a small chance of Aiden having a mosaic form of IP (which we all could live with b/c it would mean only some marks showing up on a covered area maybe another couple times in his life if at all). But we still don't know if this is what he has or if it is something else. And how would we find out, seeing as the spot has been gone since a little over a week of age? We do have a follow-up visit with the dermatologists in November - and we will see where they want to go next. We would love to have an answer, but only time will tell. (Continued prayer for Aiden in this regard would be appreciated!) Right now, we are happy with what we do know.

We are very thankful right now for so many things. We are very thankful that we live here, that we delivered at Duke, and that we are going to Duke for all of this medical stuff. We both agree - THIS is why God brought us to this area. We would not be getting this treatment from such knowledgeable medical staff anywhere else! This condition he could possibly have is very rare, and there is no better place for us to be. Even the geneticist has treated a child and written a report on a case of IP with the Klinefelter's syndrome - it is so rare that it was a huge deal to treat someone with that, and our doctor has done so. That is very reassuring and causes us to be so thankful.

And most of all, we feel so blessed to have Aiden with us. For a long while (what felt like a long while to us!!), we were faced with thinking that Aiden could have easily not made it through the pregnancy. We have not taken one day with him for granted and are so thankful he is just ALIVE and with us.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Edited for Update: Please visit here for the most recent blog update on Aiden's medical issues (as of mid-November 2008)

Breastmilk - More than just lunch...

Earlier yesterday, I had to take Aiden to the dr. Took a while to get him in, but they wanted him to be seen. He had some yucky stuff coming out of one eye and it was swollen. :( He wasn't bothered by it, but it was a Friday, we have pictures coming up on Sunday, and it's never a good sign to have yellow gunk coming out of anything really... So, in we went. The dr said they can't actually test to see if it is viral or bacterial. And it's most likely just something he got from someone in the house, and we're not showing signs b/c our immune systems are stronger. (I tell Camden this ALL the time, reminding him to wash his hands - esp after school! and not get right up in Aiden's face, which he loves to do b/c he loves Aiden like crazy!) And both Ryan and Camden have colds, so.... Anyway, she's about to write up a prescription for eye drops when she turns to me How old is he again? Um, 12 weeks. Yeah, he's too young for drops.

She wheels closer. Props her elbows on her knees, leans towards me, and says Now, you're going to think I'm crazy, but just listen... I already knew what she was going to say. I've heard you can do this for ear infections... So I didn't think she was crazy. She said many people do when they first hear it. Put a few drops of breastmilk into his eye a couple times a day. Yep, folks - it's more than just yummy food for the babies. And guess what - it's almost back to normal. In fact, anyone else wouldn't even notice there was anything wrong. I just do b/c I'm mom.

Just thought I would share.

Happy Halloween!!

Last night Camden spent most of the night at a friend's party - where he was the only boy there! (Well, one other boy was invited but didn't make it, and the girl's brother was there - so we heard he and Camden spent most of their time together.) He did want to trick-or-treat some, so we went out for about an hour. Towards the end, we heard this girl that looked to be only a year or two older than him yelling from her porch Come on trick-or-treaters! We haven't got all night! It was pretty entertaining. When we got there, she started talking to us about how lovely the weather had been. Haha! (It was actually quite cold by this point, though...)

The next house, while Camden was leaving, he took off his mask - which then left him wearing his UK toboggan. The lady at the door saw it and said they were from Lexington. :) Small world.

Camden discovered that only an hour of trick-or-treating does not get you a whole lot of candy. But he also realized he didn't care. (He hardly ever eats it anyway! He ends up forgetting about it...) He had more fun at the party. (Maybe b/c he was surrounded by girls... What do you think?) ;)

Here are pics from the night - there are just a few (really - I know that may seem impossible with me, but it's the truth this time). We did put Aiden in his little costume for a few minutes. Long enough to get the pictures, at least. He was really cute. Camden loved it and kept saying He's so cute! He's so cute! (He really IS crazy about his brother!) There are also pics of pumpkin-carving. Camden drew a face on one and we did an "A" for Aiden on another.

Halloween 2008

And here are our "Pumpkin Pictures" - pictures of Aiden and Camden with pre-carved pumpkins. They turned out really cute! And they were a lot of fun to do. :) Aiden even made friends with one of the pumpkins and had a whole conversation with it. Haha!

2008 Aiden & Camden Pumpkin Pics