Busy Busy Busy!

     I apologize for the lack of posting, it has been a busy time over here and I had some techincal difficulties uploading pictures! Apparently, I upload a lot of them and I ran out of space, but I figured out a way around it! :) It seems that Liam is going through a growth spurt and is eating almost constantly and he has been a bit more fussy than his usual calm self. So I have not had as much sleep as I would like, and we have had quite the eventful week! I will be posting more pictures soon too, but for now I thought I would just share a little bit.
     The Corderos came up for the big McGough Thanksgiving dinner and we had a great time (I hope they did too!) Lots of food and it was great to spend time with both of our families together! Liam was very spoiled and it seems like he has been held by his grandmothers for days! It was a nice break for me, but I missed holding the little guy! However, I shouldn't be saying "little" because Liam no longer fits in any of his newborn clothes and it seems like he is very rapidly filling out his 0-3 month clothing. It is unreal how quickly he is growing, and he has such a mature looking face for such a young baby! He is now 6 weeks old, which seems completely unreal. It seems like he was born yesterday, yet we can not recall life without him!
    In regards to Liam's genetic testing, we received some disappointing news. He was taken in for blood work about 3 weeks ago and the lab tech was unable to get enough blood from him to do both of the tests that need to be done, so the lab collected enough blood for one test and sent it out to the lab. I then took him back a week later to attempt to get the rest and after a traumatizing few hours (traumatizing for the both of us) they were again unable to get enough blood for the second test and told us we would have to wait a month, and yet again go back for him to get blood drawn. Collecting blood from an infant, especially watching as the mother, is so hard... We were hoping that they would be able to test Javier and I to see if we were both carriers so Liam wouldn't have to go through more of this, and that is when we got more disappointing news. I spoke with the geneticist about it all this past Wednesday and he informed us that the blood work from the first test that was sent out was rejected, as again it was not enough to do the test, so now there is nothing being tested, and we have to wait till the end of the month to get blood for both of the tests, not just the one. He then also informed me that doing testing on Javi and I was not an option, because our insurance would not cover testing on us, nor is it going to cover all of the testing on Liam because, according to my insurance company, it is just not medically necessary. The company was closed for the holiday, so I am going to try to see what I can do, and if we get the geneticist to write to the insurance about how necessary the tests are, then they may possibly cover it, but we have some work to do, so keep us in your prayers.
     As I have heard from a lot of people, everyone would like to see a picture of Liam and I together. I have done a great job of avoiding pictures, as usually I am the one behind the camera, but my cousin Alyssa snapped one from Thanksgiving, so I figured I had to share it along with a couple pictures from the past week.

Liam and I at Thanksgiving dinner (photo credit to Alyssa)

My blogging buddy with his tired mommy (sorry for the poor quality, it was taken on my laptop)

One month old! 

Funny face :)

Monkey feet!

I woke up from my nap and found these three :) That's my family!

Propped up in his boppy pillow

He is loving his play mat but it tires him out!

Cornhole game!

The other team!

Liam snuggling with his Abuela :) 

BIG turkey for Thanksgiving dinner!

The Thanksgiving dinner table

Full belly :)

Liam hanging out with his Abuela & Grandma :)

Look at that belly! 

Sleeping baby :)

Week Four

     Liam is four weeks old today! I can't believe how fast the past four weeks have gone, and he is growing up so quickly - he looks like such an old baby now! He is over 8lbs and seems to be getting bigger every day. He is spending more and more time awake and I think he is going through a growth spurt; he has been eating 4 oz every 2-3 hours! He is a hungry boy! He also seems to be becoming more aware of things around him. He loves to sit up and look at our faces while we talk to him, and he even smiled the other day when I played peek-a-boo with him! Babies typically don't have real smiles until they are about 6 weeks old so I'm not positive that it was a real smile, but it sure did seem like it! I still need to capture one of his big, toothless smiles on camera... they are just so fleeting it's hard to catch!  He also noticed the mobile and mirror on his swing for the first time and studied it for a little while before falling asleep. Tummy time is also another one of his milestones - he is practicing lifting up his head and he is doing a great job! He has a pillow that he does it on sometimes but he prefers to be on Javi or I's chest and look up at us. It's adorable :) 

Happy sleep

Waking up 

Biiiig stretch!

Still stretching those arms!

Relaxing after a hard head-lifting work out

Cutie

His binky is half the size of his face! But he loves it!

You can see through the binky :) so cute

 

Trials of Life

    So as some of you may know, little Liam has been frequenting the doctors office undergoing testing. It's something that has not been easy for me to talk about, as we do not have any definitive answers and we are still waiting on the results of the newest batch of testing.
   Liam's newborn screening done by the state came back with his levels slightly off indicating a rare genetic metabolic disorder known as Very Long Chain Acyl CoA Dehydrogenase Deficiency (VLCAD). The cut off point for a normal level for this screening is .8 and Liam's came back .81. VLCAD is a rare genetic disorder of fatty acid metabolism, when the enzyme needed to break down very long chain fatty acids is missing or not working properly. This keeps the body from metabolizing certain fats into energy, which could cause problems if Liam ever went too long without eating. Our bodies break down stored body fat and glucose for energy, and VLCAD keeps the body from breaking down the fat properly, so the body would only be able to rely on glucose for energy when going without food. Glucose is a limited energy source, and when the body runs out of it, it unsuccessfully tries to break down fat for energy, which can lead to low blood sugar (hypoglycemia) and a build up of harmful substances in the blood stream. VLCAD is genetically inherited, which would mean that both Javier and I would have to be carriers of this gene in order for Liam to be affected. Early symptoms are signs of low blood sugar, irritability, lethargy and poor muscle tone.
   The good news is that after Liam's newborn screen came back, the doctors ordered a blood and urine test. Those with VLCAD have abnormal amounts of ketones in their urine, and Liam's urine test came back with completely normal levels. However, his blood test again came back with slightly abnormal levels. We went to go see a geneticist last week who went over these tests results with us, checked Liam out for any show of symptoms and discussed the disorder with us in further detail (we were not even told the name of the disorder until this doctors visit). Liam shows none of the signs - he is very alert, has great muscle tone and reflexes and is a very calm, happy baby. Because his levels are so slightly off there are several possibilities. He could not have the disorder at all, which is what we are obviously hoping for, or he could be a carrier of the disorder, which would mean he would not be affected by the disorder. If he is a carrier, that could mean Javi or myself are carriers, or it could mean we both are and he would be lucky enough to only be a carrier as well. If that is the case, Javi and I would then need to do some genetic testing. So after the visit with the geneticist they decided to do two more tests that will definitively tell us whether or not Liam has VLCAD. The first test checks the levels of Liam's enzymes, the second looks specifically at the affected gene to see if he has the markers for VLCAD. One test will take a week, the other will take about a month. I took Liam this past Monday to get blood drawn and unfortunately they were unable to get enough to send in for both of the tests, so I take him back again this upcoming Monday to get the rest of the blood work to send in for the other test. As for now we have been instructed to not let him go more than 4 hours without feeding, other than that at this point there is nothing more we would do to manage the disorder, but later in life we may have to begin a treatment regimen which will be discussed with us if Liam is found to have the disorder. So hopefully in the next month or so we will have some real answers, and we are hoping for the best. As parents it is really hard to have to wait and wonder if there is something wrong with your child. He is such a sweet, helpless little baby and seeing him have to go through multiple blood drawings has been difficult. We will do our best to share what we find out in the upcoming weeks, please keep us in your prayers and send some good thoughts our way.