July 22, 2012 2:26am - ITP, Baby brother or sister, and Prayer

Hey Buddy,

We are in Oroville, Ca. This is where mom and I grew up from birth. We're visiting family and staying with Papa T and Grandma. We are sleeping in the garage and I am writing because my love for you is immense as you lay next to mom and I.

We came down, also, for grandpa Herman Lackey's memorial. He would be your great grandfather. I am sure you will have no memory of him. I lived with him a long time. He was quiet, loved to hunt and fish, and could be grouchy at times. I just delivered his memorial message about him finishing strong. He really stepped up for grandma Joan in her last years and I am very proud of him for doing that.

Your platelets are still down. We started meeting with a Dr. Dana Matthews, a hematologist at Children's in Seattle. She thinks it is best not to treat and so we aren't. Trying to be careful with you. Lots of praying.

Your mother is due in 4 weeks with your baby brother or sister (we are choosing not to know just as we did with you). We're a little anxious about how you are going to react to the baby. You are not very fond of either of us holding other children. Even auntie Shanin held your cousin Noah and you were upset. I am sure you will be fine. You are so smart and I sense that you understand that this baby is special. You are such a kind, caring, thoughtful child, even at 2, that I am not worried. I would love for your platelets to rise by then. The baby has a bit of an irregular heartbeat and less health issues for our little family would be a great blessing.

 You have been talking so much. Your newest phrase is "show me." You say "have" instead of "want" ("I have a cookie, mommy. Like cookie monster, mommy.") You amaze me everyday.

We have been doing a lot of praying lately. Lots of medical situations and they are all things out of our control. Your ITP, baby's heart, grandma and grandpa - none of it can be fixed by medicine. Maybe in your lifetime. We'll keep praying. Funny how these things really cause us to slow down and talk to the Lord. For a pastor, prayer has never come easy for me. It is not that I haven't seen the Lord work or even that I am too busy, it is just that I think I can do it myself, or that I can handle it. Plus, it is a little hard for me to pray for your ITP because I wonder why you got it, why other kids get diseases similar or worse than this, etc. My lack of understanding and lack of faith hinder me. I am confident that the Lord has not brought this on you. I am confident that Jesus is on the throne and about his business. I continue to pray for your healing, anyway, not understanding the process of how it all works. At this point it is hard for me to praise God for healing. I don't understand why some are healed and some aren't. I think it is best to praise God despite circumstances. Moreso, I pray that you grow up to be a man of prayer: that you would spend the majority of your morning and bed time praying. That in all things you would pray. I will do my best to develop discipline and habit to pass that on to you. In the end, prayer will have been the most important thing we will have done. Use your words for good, they have the power of life and death. Use them to speak to the Lord, by doing so you worship Jesus and you are strengthened, filled and encouraged at the same time.

I love you and think you are amazing,

Dad

Overwhelmed

Hello Buddy,

You just went through a life threatening round of ITP. We are still in the middle of this storm but things seem to be clearing up and your mother and I are praising God.

Saturday night (3 days into this big ordeal) we all just laid together on the air mattress at Grandma and Papa T's house. When we visit Oroville from Seattle, we stay in the garage. You should have been in your playpen/crib. But, being overwhelmed with praise and joy and a bit of anxiousness, your mother and I let you lay in bed with us.

We all prayed (like we do every night) and then we just laid in silence, watching you fall asleep. At first you played with your toy cars that Auntie Shanin bought you (Lightening McQueen and Mater - Mater is your favorite). You played with them, tossed and turned a little and then closed your eyes. You laid in the middle of us and we just watched you. We both were just so overwhelmed with immense joy for you being our son and being ok. Your mother cried tears of joy.

This will be one of favorite memories.

I love you!


P. S.
Here are the facebook posts about what you went through:

May 18 at 12:07am: Be praying for Titus... we are going to the Doctor's in the morning to have some spots on his skin checked out. It is probably nothing but prayers are welcomed nonetheless.

May 18 at 1:48pm: TITUS update: Titus is pretty sick but he isn't acting like it. His blood platelet count is extremely low. It should be like 200,000-300,000 and his is 3000. The most serious risk, at this point in the diagnosis, is bleeding. He is admitted to the hospital and has to be on an IV for about 6 hours because he is so young and little. All in all, at this point in the prognosis, he should be fine. Big props to Dr. Neal - what an amazing man and doctor.If you want to read more about it, here is a link with some good info: http://www.pdsa.org/assets/pdf/itp_child_web1.pdf 
Thanks!

May 18 at 3:11pm: Titus is sleeping. Hates the IV. We have plenty of snacks. He is going home tonight. Tomorrow he will have to have another blood test to count the platelets. This will tell us if the medicine is working. Right now the doctors think it is acute ITP which means that it is probably not an ongoing condition but a one time deal. It could take a month or two to get back to full health. We thank you all for the prayers so very much! Many blessings and thank you! P. S. Titus broke Erin's phone (cracked her screen). She is unable to send, receive or view texts or get on Facebook. Her phone is basically... a phone (how boring!).

May 18 at 6:11pm: Someone awoke to slurpees, smoothies, and some Cars toys. He is a happy boy. Going home in about an hour!

 



May 18 at 10:03pm: Titus finished his IV at 8:15, came home and ate all his sweet potatoes, broccoli, and rice. Then he took a bath. Now it is movie night. Blood test in the morning. Thank you all again for your prayers. We had amazing doctors and nurses. Continued prayers as we move towards our next tests! 

Blessings!

Saturday at 10:09am: Titus had his blood drawn again this morning (with the help of Mater and Lightening McQueen). When we drove back to Erin's parents house (5 mins) and walked in the door the phone rang - it was Dr. Neal. The good Doctor hoped that his blood platelet count would rise from 3000 to 15,000 - maybe 20,000 - in response to the medicine. There was a good chance he could stay the same.

TITUS'S PLATELET COUNT IS 66,000!!!! This has completely blown all our expectations! 

Thankful to God, the great doctors and nurses, and Oroville Hospital. Dr. Neal is the man! We are not completely out of the woods, anticipating more blood tests next week and the couple months it might take for full recovery. We have to make sure he doesn't bump his head too hard or get cut too deep, but for now we are celebrating!!

Thank you all for the love, encouragement and prayers!

From your mother on Sunday at 8:50pm: We don't know how to express how grateful we are for all of your prayers and support over these past few days. Thank you all so much. Everything seemed to fall magically into place, but we know it was due to God's grace and all the prayers we have received and continue to receive. 

Jaymes leaves tomorrow and Titus and I leave on Wednesday morning. Titus has a doctor's appointment on Thursday in Seattle to follow up on everything that has happened here in Oroville. We ask for continued prayer for safe flights for all and for a healthy check-up on Thursday...and to somehow keep Titus from bonking his head, even while wearing a helmet... 

I apologize to anyone who has text/called or messaged me the past few days. I should have a working phone later this week and I plan on catching up with e-mails and Facebook when I get home :) Again- we cannot thank everyone enough. Thank you all and many MANY blessings to you!

"Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise them up...The prayer of a righteous person is powerful and effective." James 5:13-16

Look who's talkin' - Titus and Baby Talk!

I know I need to update this more. I am sorry. Stop calling me and emailing me telling me that you are going through literal withdrawals. I maintain that it is impossible to be addicted to a blog.

This update is not about a milestone or something new, per se, but just an update about how cute and awesome my son, Titus Jaymes, is. This video below is kinda long, but it makes me smile every time. http://www.youtube.com/watch?v=oqD0ykYX9-0 (Might be Loud... sorry!).

Language is so important to a society and individual. In my major, Sociology, there is a school of thought called structuralism. This philosophy believes that language is one of the key shapers of socialization. That our words and symbols in and through social interaction, entertainment, art etc. all shape and create humanity; our human being-ness. Whether it is true or not, it is an interesting thought. That my words could make or break him. That I could create walls where none exist or open up vaults that were previously thought uncrackable.


The Christian tradition has a lot to say about the word. Scripture is regarded as the Word of God. God spoke creation into existence. Jesus personified that creating word by having the title of Word of God. God's word is seen as life sustaining, life giving and able to impart eternal life. Scripture says that the tongue is a small part of the body with great power. It compares it to the rudder on a ship, though small in nature, it steers the whole ship. Jesus famously said, "For out of the overflow of the heart the mouth speaks" which is both a curse and a promise.

Proverbs 18 boldly says, "The tongue has the power of life and death..." Titus Jaymes Lackey, may you always use yours for life. Though I am assured that you won't, may you always be quick with an apology and to make things right. May I be the best example you. May I speak only words that encourage you and strengthen you, that embolden you to live servants life. May Paul's words to the Ephesians be true of you, "Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen." May I speak walls into the places for where I shouldn't have been and may I break every stronghold for you that has held me back.

Titus goes to the Lake!

This blog has always been about my little buddy Titus. It could be about a story I remember from his birth or a milestone or just something awesome. This one is just documenting a first.

Titus is having so many firsts. Everyday something amazing is happening to him. He is my little explorer trying new things all the time. And he is so cool about it all. I mean, seriously he is just so chill about everything. He only cries when he is tired or hungry. The only things that scare him, besides loud noises in general, are applause, plastics bags and the lawn mower, otherwise he is good.

This particular episode is about his first trip to our local lake. Lake Oroville is such an awesome thing in our neck of the woods (especially since a highlight of our town is that we have not one but two Taco Bells... BOOYAH!). The lake is man-made with a huge dam. I am talking like the biggest dam in the US. Our dam is like 45 feet taller than Hoover. It is the 23rd largest dam in the World. Not too bad for a little town whose biggest recent news is that they just got their first Denny's and Applebee's.

My grandfather, Titus's great-grandfather, Herman Lackey moved here with my grandmother, Joan Lackey (Wilma) and two young children (My Dad and Uncle) to work on the dam. My grandfather said he did a number of things but mostly blasting with dynamite. I once asked him how he got that job, assuming that he would have to have some prior experience or schooling. He said that he just showed up on the job and they put him to work. He said he was blasting into the sides of mountains on the first day! WHAT!?!?! "Here son, you have all your fingers. There is a mountain, go blow it up!" Sounds about right. I have to go to school for 7-8 years earning my bachelor's and Master's to be an ordained minister in a local church and he gets to blow up the earth with little more than waking up and making it to work on time. And they tell me my generation is lazy.

This dam and lake are a staple in our local community and this video is about Titus's first trip into its murky, refreshing waters! We went with our youth group.

P. S. look out for Titus's new Roar. We have been calling it the dinosaur roar even though he doesn't know what dinosaurs or roars are. He is just too awesome.

P. S. S. here is a link to the same video above only better quality on youtube: http://www.youtube.com/watch?v=N6dW2dDmBH8 &&& today is Titus's 5 Month Birthday!!!!

He's got the whole wide world in his hands...

Holding Dad's finger!

...well, at least teething rings, hair, clothes on the rack at the store, his own mouth and the eventual throw up. He seems to be grabbing everything. He is like the hamburglar if hamburgers were everything.

And he grabs with great intensity. He focuses on his object almost to the point of going cross-eyed. Sometimes his head shakes in the focus process, kind of like he just got dizzy. Then he reaches out with both hands so wide, almost as if he is sneaking up on it. It's ok though, all good things come from great struggles.

I mean, this is a revolution. He is changing and will never be the same again. He is becoming aware of himself. The appendages that used to flail around and hit him in the face when he was falling asleep, only to wake himself up, now can be beneficial.

It is like a brain grenade because it is blowing my mind. I am seeing the Copernican revolution & Kantian revelation all in one glance. "In the beginning when God created^* the heavens and the earth, ²the earth was a formless void and darkness covered the face of the deep, while a wind from God^* swept over the face of the waters. ³Then God said, ‘Let there be light’; and there was light." I am seeing darkness turn to light. I am seeing void being transformed into substance.

In all seriousness, this is amazing. I am witnessing another human being become more and more self-aware over the course of days and weeks. What an incredible blessing that not only do I get to witness it, but be apart of it as well. Being able to fellowship in it with my son as his father is such a huge thing.

I hope he uses his hands for good. I pray that he realizes the fantastic potential he has to craft, craft this world for the better. I pray that his hands reach, reach out to the least of these, the downtrodden, the sick, the hurting and the hopeless and help them. I pray that his hands mold the fabric of society for the better by his own witness and example. I pray that his hands create beauty and peace wherever he is. And may I be the best example to him in all these ways.

"Your fasting ends in quarreling and strife, and in striking each other with wicked fists. 

You cannot fast as you do today and expect your voice to be heard on high.

Is this the kind of fast I have chosen, only a day for a man to humble himself? 

Is it only for bowing one's head like a reed and for lying on sackcloth and ashes? 

Is that what you call a fast, a day acceptable to the LORD

"Is not this the kind of fasting I have chosen: to LOOSE the chains of injustice
 and UNTIE the cords of the yoke, to SET the oppressed free and BREAK every yoke?

 Is it not to SHARE your food with the hungry and to PROVIDE the poor wanderer with shelter,

when you see the naked, to CLOTHE him, and not to turn away from your own flesh and blood?

Then your light will break forth like the dawn, and your healing will quickly appear; 

then your righteousness will go before you, and the glory of the LORD will be your rear guard.

Then you will call, and the LORD will answer; you will cry for help, and he will say: Here am I. 

"If you do away with the yoke of oppression, with the pointing finger and malicious talk,

and if you spend yourselves in behalf of the hungry and SATISFY the needs of the oppressed, 

then your light will rise in the darkness, and your night will become like the noonday.

The LORD will guide you always; he will satisfy your needs in a sun-scorched land 

and will strengthen your frame. You will be like a well-watered garden, 

like a spring whose waters never fail.

    

Your people will rebuild the ancient ruins and will raise up the age-old foundations;
 you will be called Repairer of Broken Walls, Restorer of Streets with Dwellings. 

~The mouth of the LORD has spoken" (Isaiah 58).

 ^4"

4 Month Doctor Visit! (And two month visit recap).

At two months, Titus, Erin and I went to the Pediatrician for his check up. The check up uncovered some things that were great, upsetting and revealing.

First, that Titus was totally healthy. He was good to go. He was thriving. All my prayers had been answered with this one.

The upsetting thing, to me, was that he was in the 25th percentile of height and weight for his age (10lbs 11oz and 22" long). To my knowledge, this means that 75% of healthy babies were bigger than he was. The Doctor assured me that small babies don't necessarily turn out to be small adults and that his height and weight matched so there was no malnourishment going on; just small. Here is why this was upsetting to me. First, his name is 'Titus.' That is a big name to live up to. It is huge. I am afraid that he will be dwarfed by his name. That he will live in the shadow of it like the other Baldwin brothers do Alec. But most importantly, I want his future to be open. I am a sociology major. I know the power of roles and perceptions and the looking glass self and stigma etc. I know the way appearances lock us in and bind us. I know how harsh children can be. Plus, with a dad like me, he is going to need all the chances he can get. So I want Titus to have choices. I want him to be big enough to play sports if he wants but also free enough to choose to be a nerd if he wants. Neither of these should be forced on him. I have no idea if that makes sense to anyone but myself but there it is. (What I secretly hope is that he chooses to be a nerd, bookish, poetic, musician, romantic, intellectual type because let's be honest this persona comes with enough hardship to create humility, enough passion to be effective in important things and enough confidence in the mind to be interesting and successful. Not that I am judging anyone else or their kids, this is just what I desire for myself and family. I mean, being a band kid meant social disenfranchisement but what awesome kids most of us are, to me).

The most revealing part of this 2 month visit was the shots part. Titus needed two shots. I was so concerned because Erin and I talked before hand and I thought I was going to have to be the strong one seeing our one and only son get poked by needles until he screamed. I imagined my wife needing to be restrained as she would be distraught with empathy and sadness over her baby boy getting stabbed,  completely forgetting the fact the she works at the hospital and sees people's insides all the time in surgery, and that I was the one with the over reacting empathy and queasy stomach As we geared up for the shots, I thought mom should take a back seat and I would let Titus hold my hand. The first shot went in. He squeezed my index finger as he looked up, staring off into nowhere, with his concerned face like, "What was that very unpleasant feeling in my thigh? I hope that doesn't happen again" (although he didn't know any of those words, I am a dad and can read those kind of things). Erin and I were relieved, he seemed more angry and puzzled then upset. But then the second one. They stuck it in and he went off like an alarm clock, only this alarm clock broke my heart into a million pieces. I knew he needed the shots. But I was the one who teared up. I was the one who almost lost it. I scooped him up and we both cried. I much more subdues and teary eyed, he screaming at the top of his lungs. Mom was shaken up, but much stronger than both of us. She held it together and comforted both of us. It was from then on I realized that I was hooked. I was in love with this crying, bald little man. He had my heart.

The screaming stopped only momentarily. We came home after visiting Great Grandma Judie and Titus woke up from his nap screaming bloody murder. We couldn't sooth him. We tried everything from warm compresses to considering medicine. But since he was so young and he winced/ cried at the touch, we were forced to try our sure fire back up; the bath. He loves the bath and it calms him right down. The bath calmed him long enough for us to look on the internet for a solution (how did parents do this before computers?) and most the answers were basically to hold him and let him cry it out. We gave him a bottle, his other favorite, and he fell asleep. His is the frantic facebook message I shot out to my friends with kids:

"Titus just got his first shots (2 month) and he cried some after the shot (understandably)... He took a half hour nap after getting home and being fine. When he woke up he started screaming inconsolably (no food, pacifier, or rocking). He slept again through our dinner and then woke up screaming again. We bathed him and he cried through the bath (uncharacteristic) but calmed down. We bottle fed him (his go-to soother). He is now sleeping.

He has no fever and I have internet researched this and people say it is normal.

I am wondering if this happened to you and what did you do? Have any of you given your two month old Tylenol or Motrin? Any advice? ...

At the very least, be praying for us!"

By the time people responded, he was all better. The next day it was like none of it ever happened.

By now you're saying, "But this blog is entitled '4 Month Doctor Visit!' where is the 4 month stuff?" If you thought that, then just close your browser window and leave. Just go. I have had enough of your second guessing... I am sorry. I didn't mean to be so harsh. You can stay.

Well... anyway, today we had our 4 month appointment. We had 5 things on our mind. (1) His head seemed to be flattening out in the back now that he is moving it more. (2) He has a slight rash that keeps appearing in the man region. (3) Should we be giving him some water since it has been so hot and all the 'wisdom' we keep getting from the older generation points that way? (4)The SHOTS!!!! (5) His percentile of weight and height. 1-3 were answered very quickly without much discussion. But 5 came up. Titus is huge now. For height, he is in the 50th percentile (25.25") which I assume is about average. His weight is 15lbs 10oz putting him in the 75th percentile; translation "big." You think I would be happy, right? Wrong. Now I am concerned we packed on too much weight to which my wife replies, "Is there any weight you will be happy with?"  Sure, but I just want to be cautious about weight gain for the same reasons I don't want him too small. Not that I am some body-image-conscious jerk, it is just that I want to be doing the right thing and have no idea whether I am or not. Surely I will love him just as he is until my dying breath. Doc said he will burn some off when he starts to crawl and that we should stop feeding him just to soothe him.

But then the SHOTS!!! By four months, some doctors say it is ok to give babies some medicine a half hour before shots to ease the shock and pain. I don't know how I feel about all that yet, both ethically and for his physical health, but last time was still fresh in my mind. I had gotten some that day and we gave it to him in the parking lot so that no one would see us doing it. We had hoped that it would minimize the effect for our beloved son. I was relieved to see only two shots but still... two. The first one went easy. He didn't even scrunch up his face to which the nurse replied, "Yeah, most babies do fine with this one." Hey nurse lady, my son just got a shot and didn't cry. But thanks for throwing a big wet towel on the parade. She then proceeded, "It's this next one they don't really like so much..." First of all, these needles are huge. Like index finger size... well... maybe not that big, but huge. And secondly, they push it all the way into the thigh. And these things are long. Like 60th percentile in height if there were such a thing in the needle world. And they really do go all the way in. So, on the second needle stick, he bellowed. He cried like a baby. I scooped him up and shed my tear with him. But we were much better this time. The hardest part was that by 4 months he had a more developed tear duct system than at 2 months. Either way, we knew this was the best. Then the nurse said, "You don't have to leave right away if you want to nurse him." He wasn't hungry nor did he need to be nursed, but we knew it would make him feel better so we stayed to make him feel better. And that is why he is in the 75th percentile in weight and will probably develop some weird mother/ food/ comfort habits. But until then, I consider it a pretty successful trip.

It is 3:30 am the next morning and he has been fine. A little fussier last night, but all in all no screaming or sensitivity to the touch. I love my little buddy. He is a blast.

Titus... walking!?!?

Titus is getting so big so fast that I feel at odds with the story telling. I want to continue chronologically but I fear I will miss too many developments happening now. It is kinda of like when I watched "8 Mile" and desired so intently to battle rap somebody but also knew very well that I can't rap. So I did nothing. So, from now on, I will be going out of order but keeping the posts coming.

Below is a video of Titus. He is in his walker and he has just learned to take a few steps. Some of his other hobbies are highlighted as well. He loves ceiling fans. Kind of like an adult mobile if you will. He stares longingly at his yellow bear on the walker. One time, in frustration from being in the walker too long, he hit his bear (I think it was by accident: a flailing of the arms in anger of sorts but mom thinks he might need anger management).

But most importantly and excitedly, you will see how much he is 'talking.' He loves to talk. He sings and talks and yells and tries to be funny. I mean, he is not telling jokes, but you can totally tell when he is being lighthearted and silly. He is very high pitched. But we think his normal voice is a bit lower. I think he will walk and talk early for a boy, but then again every parent probably thinks their child is special. He is the apple of my eye and I love him immensely.

Hope you enjoy!

P. S. We think he has been teething for a while as he is drooling and chewing on his hands and my hands and teething rings and blankets and just about anything that will fit. Still no teeth. Also, the anklet he has on is from family camp. Erin made one for each of us. They are precious to me!