I don't think Mother Nature has received the memo yet about the change in season. This week we are still looking at temperatures in the high 90's to 100! I'm melting here!!! I did see on the news that there might be some end in sight early next week, but I won't believe it until I see it. Those weather people are born liars!
I can't wait to take Diva and Dude to the pumpkin patch, have a hot chocolate and have girl talk with Diva, get back into my sweatshirts (I love me some sweatshirts!), and start decorating for Halloween.
Oh my precious Fall weather...where are you?
Thursday, September 24, 2009
Monday, September 14, 2009
Part 4
Well, Part 4 came sooner than we expected. On Friday I had my much over do hair appointment and hubby and taken the kiddos out for lunch. While we were gone the Dr left the best message on the answering machine! They could only find one copy of the gene therefore it is not a mutation and Dude is just a carrier!!! He won't have to worry about it until he decides to have children. Thank you everyone for your thoughts and prayers!
Wednesday, September 9, 2009
Code name...the procrastinator
Dude will be 2 months old on Friday!!! Have I ordered his birth announcements? Nope! I figured out what photos I want to use tonight and hopefully will be ordering them this weekend. Here are the finalists:
Option 1
Option 2
Option 3
Here is a sneak peek at one of the photos that I took for Dude's announcement. Aren't they cute!?!?! My friend made the diaper cover for Dude...I love it!
Option 1
Option 2
Option 3
Here is a sneak peek at one of the photos that I took for Dude's announcement. Aren't they cute!?!?! My friend made the diaper cover for Dude...I love it!
Wednesday, September 2, 2009
Part 3
Last week we went to meet the geneticist. Dude's test came back that he does have the gene from the disorder, but is likely a carrier. One of his test levels was elevated which worried the Dr. and Dude had to have more blood work done to find out if his levels were elevated due to having a mutated gene of the disorder. Wow, my son might be a mutant! He could be his own X-Men character!!!
The Dr explained to us that if Dude does have MCAD he will live a normal life. We will have to be more aware of when he fasts or is dehydrated (sick, overheated...). He will also need to follow a low fat diet when he turns a year old. I knew at some point in my life I would have to go on a low fat diet! If he does have an episode, he will have to go to the ER for fluids. It's very much like being a diabetic. He will be able to do everything every kid his age will be doing.
After meeting with the Dr we met with the rest of the "team", a dietitian, a nurse, and a clinical social worker. So much for me telling my mom we would be an hour max when she agreed to watch Diva. Three hours later we were finally getting the blood work done.
Part 4 will have to wait until we have the test results in 4-6 weeks. The results will be coming at a very difficult time for us. I will be going back to work. I can't imagine going back to work not knowing the outcome or even worse...knowing that he does have it. Hubby and our families are being optimistic that he does not have it. I'm getting myself ready just in case. Of course I do pray that he is just a carrier, but after meeting with the "team" I feel so much better about Dude's prognosis if he does have it.
The Dr explained to us that if Dude does have MCAD he will live a normal life. We will have to be more aware of when he fasts or is dehydrated (sick, overheated...). He will also need to follow a low fat diet when he turns a year old. I knew at some point in my life I would have to go on a low fat diet! If he does have an episode, he will have to go to the ER for fluids. It's very much like being a diabetic. He will be able to do everything every kid his age will be doing.
After meeting with the Dr we met with the rest of the "team", a dietitian, a nurse, and a clinical social worker. So much for me telling my mom we would be an hour max when she agreed to watch Diva. Three hours later we were finally getting the blood work done.
Part 4 will have to wait until we have the test results in 4-6 weeks. The results will be coming at a very difficult time for us. I will be going back to work. I can't imagine going back to work not knowing the outcome or even worse...knowing that he does have it. Hubby and our families are being optimistic that he does not have it. I'm getting myself ready just in case. Of course I do pray that he is just a carrier, but after meeting with the "team" I feel so much better about Dude's prognosis if he does have it.
Tuesday, September 1, 2009
Don't hate me....
I forgot that I hadn't written Part 3! I thought I did and had it scheduled for posting today...oops. I'm barely functioning tonight, but I promise to have Part 3 up tomorrow.
Monday, August 31, 2009
Part 2
The Dr had explained to hubby that the test was very sensitive and since Dudes levels were low he felt it was a 95% chance that he did not have MCAD. Dude would have to have more bloodwork done immediately. At this point, hubby explained to me that Dude was fine and that the Dr didn't feel he had it. Worst case he would need to be on L-Caratine medicine. Ok, I can live with that.
On Dude's one week birthday we took him in for his bloodwork. I knew I wouldn't be able to be in the room when the blood was taken, I can barely handle watching myself get poked with the needle! I sat in the waiting room hearing my baby cry, feeling little comfort knowing hubby was with him. Dude needed his mommy!
That night hubby and I were talking about MCAD and I asked a question that he didn't know the answer to. He told me he would call the Dr in the morning. I thought to myself..."no worries, I have the internet!". Hubby went into Diva's room to play with her while I fed Dude. I decided to use my mommy powers of multi-tasking and got out the laptop. I googled MCAD. Massaccusets Commission Against Discrimination...no. Montgomery Central Appraisal District..no. Microsoft Certified Applications Developer...nope. MCAD-Medium Chain acyl CoA Dehydrogenase...that's got to be it. I clicked on the website and the first paragraph explained what MCAD was. MCAD is an enzyme that breaks down fat. For those that have the disorder, they are either missing the enzyme or it's not working properly. Then I looked at the third paragraph. It may be the cause of 1 out of 100 infant deaths thought to be SIDS. It's a silent killer, you don't know that a child has the disorder until they get sick, fasting, or dehydrated and falls into a coma at which time it's usually too late. I couldn't read anymore. I was in shock. The perfect child I was holding had a killer inside him that could strike at any time. Hubby walked in and I had tears running down my face and couldn't speak. He saw I was barely holding onto Dude. I couldn't look at him. I finally was able to get out that I had googled MCAD. His response "why did you go and do that!". That night I felt like a horrible mom, I could barely look at or hold Dude without crying and thinking he was going to die. I felt horrible. No more Google for me!
When I was able to listen to hubby he finally explained everything the Dr had said. MCAD is not a death sentence. Since the newborn screening has included MCAD, there have been no known deaths after getting the results and following the treatment plan. Until we got the results back, we would need to make sure that Dude was feeding well and not getting overheated. If he isn't eating well, get's sick, or dehydrated then we would have to take him to the ER for IV fluids. The Dr didn't go into much more detail with hubby since he was 95% sure he wouldn't have to talk to us again after the results came back.
Every day I continued to cry, but with each day did get better and stronger. Then on Dude's three week birthday the phone rang. It was the Dr. So much for being 95% sure.
On Dude's one week birthday we took him in for his bloodwork. I knew I wouldn't be able to be in the room when the blood was taken, I can barely handle watching myself get poked with the needle! I sat in the waiting room hearing my baby cry, feeling little comfort knowing hubby was with him. Dude needed his mommy!
That night hubby and I were talking about MCAD and I asked a question that he didn't know the answer to. He told me he would call the Dr in the morning. I thought to myself..."no worries, I have the internet!". Hubby went into Diva's room to play with her while I fed Dude. I decided to use my mommy powers of multi-tasking and got out the laptop. I googled MCAD. Massaccusets Commission Against Discrimination...no. Montgomery Central Appraisal District..no. Microsoft Certified Applications Developer...nope. MCAD-Medium Chain acyl CoA Dehydrogenase...that's got to be it. I clicked on the website and the first paragraph explained what MCAD was. MCAD is an enzyme that breaks down fat. For those that have the disorder, they are either missing the enzyme or it's not working properly. Then I looked at the third paragraph. It may be the cause of 1 out of 100 infant deaths thought to be SIDS. It's a silent killer, you don't know that a child has the disorder until they get sick, fasting, or dehydrated and falls into a coma at which time it's usually too late. I couldn't read anymore. I was in shock. The perfect child I was holding had a killer inside him that could strike at any time. Hubby walked in and I had tears running down my face and couldn't speak. He saw I was barely holding onto Dude. I couldn't look at him. I finally was able to get out that I had googled MCAD. His response "why did you go and do that!". That night I felt like a horrible mom, I could barely look at or hold Dude without crying and thinking he was going to die. I felt horrible. No more Google for me!
When I was able to listen to hubby he finally explained everything the Dr had said. MCAD is not a death sentence. Since the newborn screening has included MCAD, there have been no known deaths after getting the results and following the treatment plan. Until we got the results back, we would need to make sure that Dude was feeding well and not getting overheated. If he isn't eating well, get's sick, or dehydrated then we would have to take him to the ER for IV fluids. The Dr didn't go into much more detail with hubby since he was 95% sure he wouldn't have to talk to us again after the results came back.
Every day I continued to cry, but with each day did get better and stronger. Then on Dude's three week birthday the phone rang. It was the Dr. So much for being 95% sure.
Sunday, August 30, 2009
Part 1~ Huh?!?!
I brought up in my last post that Dude had a Dr's appointment in my last post and had contemplated on waiting to write this until we had the results, but the results will not be available for another 4-6 weeks and I feel that I need to write about what we are going through with dude. I'm going to break this post into four posts, ending with hopefully good news about the test results.
When Diva was born in 2005, California's newborn screening tested for only 4 disorders. By the end of 2005, the number jumped to 100 disorders that California continues to test for.
We had only been home a day when the call came in "Hello is this Children's Services with a referral from your child's pediatrician". Ummmm...He's only been home a day and his Dr is already calling CPS on me! I figured I had at least another week before someone figured out I was not ready for two children!!! The woman would not explain what she was calling for. She explained the only information she had was my name, my son's birth date, and a code...MCAD. I asked what that code was for and she said she did not know. Come to find out she wasn't from CPS, Children's services is the governing body for the newborn screenings in California and helps families with paying for the additional testing. She couldn't even explain that to me, so she is being given the Asshat award!
We had seen Dudes pediatrician earlier in the day and was told he was perfect (of course!). Hubby was upset with the call from Children's services, so he called the Dr. The Dr. had no idea what was going on either, but an hour later she also had a referral from the lab and from the geneticist. Dude's newborn screening had come back elevated from MCAD. The geneticist called soon after and spoke with hubby. He explained that MCAD is a genetic disorder in which a persons body cannot break down fats into energy. Dude would need further tests to determine if he does in fact have the disorder or is a carrier. The geneticist went into great detail with hubby about the disorder and what would be our next step. Hubby explained to me what was going on, leaving a few things out that he thought a new mommy recovering from a c-section didn't need to know right then. Unfortunately, he had forgotten about my mad googling abilites...
~ Part two tomorrow.
When Diva was born in 2005, California's newborn screening tested for only 4 disorders. By the end of 2005, the number jumped to 100 disorders that California continues to test for.
We had only been home a day when the call came in "Hello is this Children's Services with a referral from your child's pediatrician". Ummmm...He's only been home a day and his Dr is already calling CPS on me! I figured I had at least another week before someone figured out I was not ready for two children!!! The woman would not explain what she was calling for. She explained the only information she had was my name, my son's birth date, and a code...MCAD. I asked what that code was for and she said she did not know. Come to find out she wasn't from CPS, Children's services is the governing body for the newborn screenings in California and helps families with paying for the additional testing. She couldn't even explain that to me, so she is being given the Asshat award!
We had seen Dudes pediatrician earlier in the day and was told he was perfect (of course!). Hubby was upset with the call from Children's services, so he called the Dr. The Dr. had no idea what was going on either, but an hour later she also had a referral from the lab and from the geneticist. Dude's newborn screening had come back elevated from MCAD. The geneticist called soon after and spoke with hubby. He explained that MCAD is a genetic disorder in which a persons body cannot break down fats into energy. Dude would need further tests to determine if he does in fact have the disorder or is a carrier. The geneticist went into great detail with hubby about the disorder and what would be our next step. Hubby explained to me what was going on, leaving a few things out that he thought a new mommy recovering from a c-section didn't need to know right then. Unfortunately, he had forgotten about my mad googling abilites...
~ Part two tomorrow.
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