Liam is in Heaven

I am so sorry I have failed to update this week.

Liam passed away peacefully in his momma’s arms this morning. I will post a better update tomorrow. But for now, I will continue to ask for prayers for Stacey and Jason.

Thanks to everyone who has prayed for them. You will never know how much this has been appreciated.

Thanks

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Update on Liam

The news isn’t the greatest. The micro array test was sent to Baylor University (the only facility that processes this test) and the results showed that Liam is missing a chromosome (16th I believe). Stacey and Jason have had their blood drawn as well and it is at Baylor being tested with results to come back in about two weeks. This is so they will know if it is a genetic issue from their end or if this was just a “fluke” something I had to type right now.

They have been given options of what to do next for Liam and they are leaning towards transferring him to a local hospice. The date has not been determined yet. The upside to this is that more people can visit at once and they will look at removing his vent tube. Liam can breathe and does breathe on his own, it is his airway that is the problem, too small.

I sent pictures to Walgreens to have them printed there since my printer doesn’t print great pictures and as I was picking them up the lady at the counter commented on how beautiful he is. I started to tear up right there because I kind of know how this is going to end. I don’t want him to leave us and facing that is a tough pill to swallow. One that I have and will probably continue to be in denial about.

Stacey called to let me know they were heading to the NICU to spend time with him, so I had a quick bite to eat and then headed over. I got to watch and film Jason changing a poopy diaper as well as their nurse, Linda, get Liam ready so his mama could hold him. As I was taking pictures I started to cry. I kept telling myself to suck it up because I don’t need to crumble when I am with them. I then thought about the fact that my Popa passed away six years ago close to this time. I kept thinking of him and then thinking that maybe Popa can hang out with Liam if Liam leaves us here. Then I was a mess. Poor Jason tried to come over to hug me and I kept backing away (self preservation mode, learned it from when we were dealing with Popa’s decline in health).

I finally got it together so I could sit and watch Stacey hold her beautiful baby boy. Then Linda came in again to get Liam up so Jason could switch spots with Stacey. The neat thing about all of this, they do undo his vent tubing and he is fine, breathing on his own, just his airway that makes things a bit more difficult.

We chatted for a bit longer, me snapping away, stealing moments of a beautiful family of three bonding. Most are on their camera, which I will dump onto mine soon enough. I will do a picture post tomorrow. I just downloaded the trial of Lightroom (love it, wish I could afford it!) and will do a bit of editing.

Please continue to pray for them. The strength they have is amazing. And each day I just fall more and more in love with this little guy.

A New Medical Recommendation That Irritates Me to No End

A brief break from Liam updates, I have some new pictures and news as well as an upcoming visit to see that cute little man tomorrow, so I will post everything tomorrow. But today. . .

I am mad! Madder than a wet hen! As I was getting ready to leave for work this morning, The Today Show did a segment on Pap Smears. New recommendations state that women should start getting a pap smear at age 21 and then every other year after that. I had planned on reading all about this “wonderful, new, thought out” plan but time has gotten away from me, so here is my story, my experience and my feelings on this suggestion.

I think it is bull. I don’t understand the reasoning behind it and quite frankly had I not had yearly pap smears from the age of 19, I might not be here (being a bit dramatic but hey, it is my blog after all). At the age of 24 I got the call that no woman wants to get. My pap smear was abnormal. They wanted me to come in for a biopsy and go from there. My biopsy showed irregular cells and a LEEP procedure was scheduled shortly after a meeting with my OBGYN. She was wonderful, going over everything from the causes, the outcomes, the treatments to how I was feeling emotionally about this. I was 24, scared out of my wits that I had cervical cancer. 24 people, I was young, not yet thinking about having kids and here I had to start thinking about the what ifs. What if I did have cancer, treat it, take everything out?

My mother had just a few years prior to this been diagnosed with displasia and hers was worse than mine. They  froze off part of her cervix to annihilate the pre-cancerous cells. In hindsight, she had wished that they had gone ahead and taken all of it since menopause was not a pretty thing on my mom.

My biopsy showed these same cells but a milder case and off I went to have a LEEP. Basically the shaving of the first layer of my cervix followed up by pap smears every six months for the next two years I believe. I passed with flying colors and until this past May, always had normal results. This May proved to be a trying time. Now I was ready for kids and the potential to lose my reproductive organs scared me more than never getting married.

As a woman who has been able to have yearly pap smears, I will strongly say to anyone who says they are not needed annually or to women who “just hate going for this”

Sitting on an uncomfortable table, in an ugly gown, towel wrapped around my cellulite ridden butt and thighs, I will spread my legs each and every year for that five minutes of “uncomfortable” probing, prodding and generic chit chat. I will because I know the importance of catching this disease as early as possible. Cancer is not something that you play chicken with, you meet it head on, you get over yourself and spread the legs. Why? Because the statistics of one in three women getting some form of cancer is real. Cervical cancer is mean, nasty and I have seen what cancer can do. It can ravage a person, steal their youth, vibrance and take people from their families way too soon.

So, I apologize medical community, but your opinion on this topic is bull. My body, my life, my decisions. I arm myself with information when dealing with problems, including medical issues. And I for one value my life a bit more than what any research you want to throw my way.

So get your pap smear, mamograms or prostate exams and if your doctor shies away from doing it every year, find one that will listen to you. You hired your doctor to take care of your health, you can fire them as well if you don’t feel 100% about their practices.

A Step in the Right Direction

For those who have been reading along at Caring Bridge, I will make this a bit brief on the status of Liam’s health. As of right now, the doctors are going towards the direction of neuromuscular disease/syndrome. They will be performing a muscle biopsy soon. Also, they are concerned about his brain activity and that Liam’s brain did not fully develop in utero.

The news, after I read it, hit me like a ton of bricks. I try not to call and pester too much, so after a brief text message yesterday to Stacey and hearing back that they were okay, just really tired, I opted to wait until she posted an update before jumping to the worst possible conclusion. I read it outloud to a coworker before grabbing something to eat. All I could do was try to breath, concentrate on the words and not let my mind race to a million different bad scenarios.

Luckily the coworker I was reading it to was Amy. Her son was born two months early, contracted a staff infection and probably had every piece of bad news delivered to her during the two months B was in the hospital. She explained to me what the doctors said about B, he could be in a vegitative state for the rest of his life, he may never walk, he may never develop mentally, etc.

Bottom line, a parent’s worst nightmare. B is getting ready to celebrate his fifth birthday, he is in mainstream PreK, can walk with the aid of a walker and will begin a new therapy shortly that entails wearing a bungie suit that will help him grow stronger and will be able to walk on his own. He has had Botox therapy for his legs and goes weekly for horse therapy. While his legs are strong enough to walk, the therapists say that now it is a maturity thing.

So, for a little boy whom doctors didn’t think had much hope, he has proven them all wrong. And, can I just say, he is a doll! The big brown eyes kill me!

I keep this information close to my heart because this is what gives me hope for Liam. Sweet, can’t get enough of those cheeks, can’t wait till he is running us all over the place and in particular driving his mommy and daddy crazy, asking to borrow the car, stay out late, etc. I have great hopes for him and I know that God does too.

Please continue to pray for them. Pray that Stacey and Jason continue to feel a peace about the process as well as the strength to keep on going. I know from what little I do, I am exhausted, so I can only imagine how they are feeling right about now.

And little Liam? Happy early Birthday little man! Tomorrow you will be two weeks old. I can’t even remember life without you around but you could have stayed put a few more weeks but I guess you were just as excited to meet your parents as they were to meet you! I will see you soon and am sure I will continue to promise the earth, moon and stars to you! Of course, your mommy is very sensible and reels me in when needed!

A Heartfelt Thank You to All of You!

I am the very first to admit that I don’t go to church on a regular basis. I grew up in the church, I believe in God and trust Him through all things. But I have struggled with my faith since college. . .after being super involved in my church’s youth group, attending conference events as a teenager and even participating in Annual Conference for a few years, I lost my way.

Part of it was due to allowing what others said about me; sadly it wasn’t my peers but adults. Sure, I was a boy crazed youth but I was involved with the conference because I had found a home there. Friends that while looking at us, you would certainly say we were a motley looking crew, were true friends. The memories I shared with them growing up made me who I am today. Flaws and all but I have to say whole heartily that they made me see what made me happy. We were dorks, ruling the summer camp, running to each other whenever a conference event happened; to share in old stories and make new memories. I loved and still love every, single one of them.

But between the questioning of involvement by adults and seeing the political side of church, I began to get angry and resentful of what had been one of the greatest times in my life. And then once college arrived, I realized that there was no “safe room” for me as a college kid. Sometimes churches forget that those college kids, the ones that had been there for every youth group event, mission trip, Sunday night firesides, Wednesday Bible studies and weekend retreats, still need those types of events, only they need to grow with them.

I walked. I left the one place that made me feel at home because those adults turned their backs on me. Was it fair? Probably not. I could have stood up, made my voice heard but I simply gave up. Then I moved away when I transferred colleges and man, I could barely keep up with school work and work. I was broke, I couldn’t handle my money and then I decided that being on my own for the first time afforded me the chance to act like a real, honest to goodness 21 year old in college. Sure, I partied but never went too far from my moral compass. At least that was still strong within me.

After college, I was trying to survive and was failing miserably at that task. I moved home and lived in my hometown for about a year and a half. At this point, I was struggling with who I was as an adult, still angry for things said and implied a half dozen years before and my parents were busy tending to my grandparents and working. So church was not a priority on my list.

I tried going back a few years ago. I found a nice church that was big, Methodist and I could finally go and be anonymous. For six years, while a teenager, I was known. Well known. Within my own church and the conference. While I liked that it was almost like a Cheers episode, where everyone knew my name, it was overwhelming. People gossip and while none of it should matter, it did bother me to a certain degree. My first boyfriend, my first kiss. . .my first drama, it all happened within the confines of church.

I started going back to church because I had just been dumped and I needed something. I was going crazy, I was depressed and I knew that getting back to the old me would be easiest by going to church. Of course, my ex’s mom was also a minister at this church. I loved hearing her preach. She has a gift and I thoroughly enjoyed hearing her words, wisdom and thoughts on the Word. Eventually, I gave up going. Part of it was the drive. While it wasn’t that far, the gas prices were not helping and I hated that I was alone. I am shy until I get to know people and I felt like such a loser being there, alone.

My parents will lecture me from time to time about not going. Fearful that I must have fallen off the wagon and in my own mind, they must have thought I was going to hell because I had turned my back on church. I never turned my back on God though. Something that they couldn’t understand.

As Stacey’s pregnancy progressed and we received bad news, then some good news and then devastating news I began to pray and pray hard. I needed to see God’s hand in this. I needed to see His will be done and for Liam to come out of this healthy, happy and down the line, driving his parents mad. I asked Stacey for her permission before I entered the first blog entry on November 5th. I didn’t want to overstep and do something that she, nor Jason might not be comfortable with but she said please. Please share and ask for prayers because that is all we have right now. At the time, we were expecting to see Liam arrive in December. Little did we know that Liam and God had another plan for us!

Even though there haven’t been many comments, your blog hits have shown me how much you all care. I always put on a brave face for my wonderful friends but knowing that you all have continued to read the updates brought me to tears. It has also renewed my faith in Him and that there are some really wonderful people out there. When I am feeling a bit down, I can come here and see that God is right here. Still here for Liam, Stacey, Jason and even little ole me.

I have had coworkers comment lucky at how they are to have me as a friend. I have blushed and then had to say that this is what friends do. We are there for each other, we call in the troops when things hit the fan and above all, we do things that even though we hate to do them (laundry anyone?) we do them because we know that it will help.

My dad and I talked last Friday (well, we talk everyday but) and he said something about church. I groaned and said, really, we need to go over this again??? Then he said something that I don’t think I will ever forget and cried as he was telling me. He said that he worried about me because I didn’t go to church but that through all of this going on with Liam, the constant requests for prayers, spending time at the hospital, doing things for them, that I was doing more than he sees some of the people who are there for church all of the time. And that he was so proud of me. I told him that I didn’t have to go to church to believe in God and that He has always been there in my heart.

So thank you all, seriously, I don’t like people asking how I am doing during this because, while I love Liam to pieces, he is not my child. I don’t have to make decisions that will affect his life. I am only a friend who cares deeply about him and his parents. People need to worry about them, not me. Because like I wrote before, it is not always about me. So thank you for being there for them. I am still waiting for an update. I fear it is not going to be a good one since it has been hours since their appointment with Liam’s doctors. I am scared to death but I know that He is with us. Please continue to pray for them. Because this little guy deserves to be home with his parents. They deserve to be his parents and we all want to be a bit selfish right now and ask for that miracle.

So thank you, I can’t say it enough. Thank you for your kindness, your love and your prayers. They lift us up daily.

Liam Update

As of this morning, Stacey and Jason are still waiting on some news about Liam. I think I speak for them when I say this waiting is for the birds!

I wanted to drop off a few pictures to share. One is me with the little guy (and I look like crap, thankfully Liam doesn’t seem to mind), one with his Jaffi and one with Liam sporting his mohawk. Kid has style AND a lot of hair.

I love you little Liam and can’t wait to see you again.

 

Visiting with Liam

Liam just keeps getting cuter and cuter everyday I see him. I am getting to know his cues when he is upset and I watch as Stacey and Jason talk to him to calm him back down. We saw one of the doctors for a brief second and he still feels the same as he did on Friday when he talked to them. While I can understand doctors wanting to give you the bottom line, even if it is bad news; I do take issue with the fact that they do not know what problems Liam has and still giving a grim outlook. I think it is a huge deal that he had hiccups yesterday and opened his eyes.

Jason is the most cynical out of the three of us and I think he is to the point of wanting to smack the doctors with all of their doom and gloom. I don’t blame him. But after seeing that second rainbow yesterday, I am taking that as a sign that God is right here with us and giving Liam the strength to fight. And to prove the doctors wrong.

So, please keep the prayers up and hopefully, they will have some answers for Stacey and Jason tomorrow. If not, I may go over there, tap my foot furiously, demanding for some answers. I can be scrappy like that.

Sweet, Sweet Baby Liam

I visited Liam today. While Stacey was kind of down in the dumps, I tried to humor both her and Jason. A little humor and a giggle tends to help. At least that is what I think. After last night, I was getting down myself but I feel like I should be there for them and be strong. And I will admit that I am in denial that Liam won’t make it. I feel such a peace when I am visiting him and am praying constantly that God will be there for this little guy.

We took a break to go get some lunch and while eating I decided to look up the scores of the college games. In particular, the Ole Miss/TN game. Glad I did! Ole Miss ended up winning. Yeah! We all laughed and Jason teased me yet again about my choice of teams to cheer for.

We chatted with one of the doctors as well and she was reassuring them that while they don’t have answers yet, that Liam is not a unique case. That they, unfortunately, have cases that cause them to do more research with little answers coming quickly. So hope is still on our side.

We were all talking to Liam, laughing about the things we will do with him when he is older and he started to have hiccups! This is the first time ever that he has done that! Praise God! Little milestones like this make you smile. I left shortly after this, kissing that cute little head of his, promising I would visit again tomorrow. Later I got a call from Stacey, Liam opened his eyes for them twice! Again, Praise God!!! Keep up the fight Liam, we are all here for you.

Here is their caring bridge link, please stop by to check on his updates, and I will continue to update here. Also, please leave a message if you like over there. Stacey gets great encouragement from this and I do as well. Really, it touches me so much to know that so many people care about this little boy and are praying for him.

http://www.caringbridge.org/visit/liamsanderson

And as I was leaving the hospital today, I saw another rainbow. Thank you God for showing me that you are indeed hearing our prayers and sending this sweet little messages.

Prayer Warriors~We Need You

I stopped by Stacey and Jason’s to return the very clean and shaved Mr. Shadow this evening. It broke my heart to leave him at the groomers but he was thrilled to see me this evening. I made a lasagna while at their house so they don’t have to worry with food right now.

But the look on Jason’s face was not good. In the time I have been friends with them, I have never seen this look before. The outlook as of right now for Liam is not good. While the doctors don’t have a diagnosis yet, they feel like he might not make it.

Stacey came down to the family room and as I was hugging her, she broke down. This made me cry. I have been trying to stay so strong for them and letting my tears flow only when I was at my house. How do you bury your own child? How do you say goodbye? I cannot even fathom the thoughts that are going through their minds right now.

I beg of you, each and everyone of you to please pray for Liam. Pray for a miracle, pray that he proves the doctors wrong. Pray for Stacey and Jason as they go through all of this. Please, please, please pray. I need a miracle for this wonderful family. They deserve to have this beautiful child in their lives.

Thank you to each and everyone of you for stopping by and reading updates, pray that God will be there throughout this and just knowing that you are praying for him makes me smile.

Liam Update

Here is the latest on little Liam, please keep him in your prayers. I will be visiting this beautiful little man this weekend and I will take some pictures to share as well.

I’ll be updating his page tonight but essentially today was a pretty good day. We spoke with another endocrinologist who reassured us Liam’s hormones are normal. There was some concern regarding his pituitary gland. They are ordering one more test to check his cortisol level but she did not anticipate seeing an issue there.

We also met with another geneticist. Nothing new to report really. They are still waiting on the full MRI results. Preliminary results show abnormal brain function. The extent of which we don’t really know yet. The micro array may be back tomorrow but it is more likely sometime over the weekend or on Monday. So still no answers for us and no meeting tomorrow.

The geneticist did say all of his doctors are very worried about Liam. He mentioned Muscular Dystrophy but there are many different types. It is just one possibility because of the rigidity of his muscles and lack of movement. He twitches a little but no big movements of either his upper or lower extremities. I managed to hear all of this without breaking down into tears. I prayed for His strength today and I know He answered.