Irritated with Blue Cross Blue Shield

Just wanted to make an annoyed post at Blue Cross Blue Shield. We LOVED Aetna, despite the fact that they did not pay for Logan's birth. They paid everything else in good time and we almost NEVER received bills because they were slow to pay. Which brings me to Blue Cross Blue Shield. I VERY much dislike them. I will tell you why. They have paid almost none of Logan's claims from Jan 1st on. This causes my already busy life to be MORE bogged down in paperwork. Very irritating. It's not as if I have tons of time to sit and call them. Also, they have deemed Logan's peritoneal dialysis "not a covered expense." Ummmmm???? Okay BCBS what would you prefer? Would you prefer the 13 month old beautiful baby in front of me to just die. It's not as if we do dialysis because it's fun or something we enjoy. We do it to keep this wonderful "getting into dog food" child of mine alive. I think I've gotten them to cover the dialysis stuff and if not I'm sure Medicare will pick it up but it's a huge annoyance in my day. Then, they have decided that Logan's blood pressure machine will absolutely NOT be paid for by them. Smart idea BCBS. Save money by making it so we can't get a blood pressure on this child. Especially since if his blood pressure were to be insanely high and he stroked out it would therefore make him a dependant for life and therefore you would be paying his medical bills for his lifetime. Great way to save money there BCBS! I filed a grievance with them. Just wanted to make it clear that we do NOT like them. The lady I talked to seemed irritated at me that I was annoyed at BCBS. Now one, I made sure to tell her it was the company I was upset with and I was perfectly nice to her. Two, this is her job. Three, I can't think of anything else but I feel like I need a three. I really don't feel like getting up and doing the grown up things like making dinner, bathing kids, and setting up the dialysis machine but I'm going to. Not that any of these things are in anyway difficult just tired and I don't want to do them. Vidal's car broke down this week. Blah. It will cost over $600 that we don't have to fix it. Double blah. Just when I feel like we are finally getting out of a whole we fall back in. But, I have faith in God, he will make it all work somehow.

Trip to the Zoo with Baby Matthew

On Thursday the boys and I took a trip to pick up Matthew and Jessica. We all went to the zoo and we had a great time! We'll have to do that more often. Then we went and had some yummy sushi!All the kiddos.

Matthew and Logan: Friends ForeverLogan contemplating whether or not he can catch a bird.All the kiddos again. The babies at lunch. While at lunch Logan fed Matthew his first ever green bean that wasn't baby food. And Matthew learned to drink from a straw. What a big day for such small people! Just a reminder in case you don't remember who Matthew is: He's the only other infant on dialysis in all of South Texas. How's that for a bond? Though, I guess now they are both just about toddlers and not infants.

Basketball

Well Upward Basketball has come and gone and I can't believe I have yet to mention it on this blog. Vidal had a great time coaching and Cristian loved his teammates. I must say, it was an exceptionally good season. The kids really learned to work together as a team. And all of the moms are awesome. I can't remember such a group with such awesome moms. They gave Vidal a plaque at the end for coaching that he loves. I'll have to get a picture of it later to post here. AND two gift certificates, one to Applebee's and one to Barnes and Noble. Really, what awesome people! We all met on Friday for an after season bowling party. Unfortunately I forgot my camera but I did get one on my phone.The kids sitting on the sidelines before the game.

Praying before the game. Vidal would probably not like me showing his butt on here, LOL.
After the game! We're missing a few kids here. Cristian made his first two baskets this game! YAY!

At the bowling party!

Live stock show

The other day we took the little people to the live stock show. Poor Vidal wasn't feeling great and so we didn't stay a really long time. But, the kids got to ride enough rides to make it worth while to have bought their arm bands. And Logey had a good enough time watching.Cristian climbing up the wall climb. He was so scared because it was really windy. But, after two tries he successfully made it up the wall!

Logan's absolute favorite thing in the world: his sippy cup with water. He drank four sippy cups full while at the Live Stock Show.Where Logan took his nap, in the mei tai.Jaden riding the bear ride. He was so bummed that he couldn't go on the big kid rides with Cristian. Oh well buddy, maybe next year.Again with his favorite thing.I noticed Jaden putting the food on all of the animal's backs at the petting zoo. I asked him why he was putting it on their backs and not feeding them. He replied, "They're not hungry. I'm putting it on their back so they can have a snack later." He said this with a "duh mom" kind of attitude. Sure enough a little later I see this. Well, I concede

Dog Food

Why is it that I can only get this child to eat that which he is not supposed to have?

Remembering....

Today I got on Mothering.com to the special needs area and the first post I saw was about a little girl who has died of cancer. Her birthday was the same day as Jaden's- 5/2/05. She would have been 4 very soon. Then I looked on Mckmama's blog and learned that while Stellan's heart is doing better, he is feeling awful.

I find it so odd how during all this turmoil in other's lives that the world keeps on going. People continue to do their jobs. Babies are born, people die and life goes on. But, in these people's lives--they are changed forever. We have had those life changing moments as well in our house and I know that life kept on while we felt like ours was paused. But, tonight I am going to say prayers for all these children and their familes and while I'm telling my children to "go to bed" for the hundredth time I am going to hug my children again and thank God that at least for now they are all somewhat healthy. Well, Logan is not what one would consider healthy but compared to others he is. His health is stable and that is what matters at this point. I am very thankful for all that we have and for our children being here with us. Every day is a miracle and to be celebrated.

Logey weight update

Well, he hit 8.59 kg. So far that is his highest weight yet. He's been in the mid 8.40s all week because he's been waking up out of a sound sleep between 3 and 5 throwing up. I'm hoping last night was the last night of that. It's horrible, I can hear his stomach gurgle and then up it comes. As you may have guessed that is making sleep for me difficult because I feel "on call" to make sure he doesn't aspirate in his sleep. Consequently, I got sick. Blah. But, I'm already starting to feel better. My mom took the older boys to her house this afternoon so Logan and I could have a nice, sound nap and she brought me some soup later. My mimi brought us some yummy cheese enchiladas that my Aunt Cheryl had made. I couldn't resist a bite. They looked too yummy! So, I had quite the pampering today. I feel much better and hopefully soon we can have that zoo date with Jessica and baby Matthew. Logan has restarted the growth hormone again since his phosphorous is close enough to goal. I am wondering whether this is what has increased the throwing up but only time will tell. I don't know whether it is a coincidence or not. Hopefully it will help him gain his last 3 1/4 lbs. He is so close and yet still so far.

After the storm...there is a rainbow

2008 was an interesting year for us. Now that we're past it, I can't really say that it was a bad year though there were definitely trying times. There were also some incredibly great times as well. There were miracles. I feel like our rainbow is here now. Logan has always been a miracle, really, each of our children are. With all the unlikely odds, how much of a miracle is it that most of our children are medically perfect? But, I consider Logan to be an even greater miracle since the chances were so slim of him making it to now. Every time I see him smile I think of what a miracle he is to our family. He has developed such a sweet sense of humor. His favorite things to do are to play with his brothers and to take a shower. Our pastor used to tell us, "Logan just doesn't know he's sick." How true this is. But, even more so I realize that now. Someone forgot to tell him and for that, I am grateful.

I don't know what the future holds. I feel at peace. I know that God will lead us down the road he feels we should take. I can honestly say that I am grateful for every minute with Logan and I try to be with Cristian and Jaden as well. To be continued, children need their mommy now. : )

I'm back on and children are all asleep, at least for the time being. My children unfortunately seem to have inherited my distaste for sleep. And really unfortunately they seem to have done it at a time when I am starting to enjoy my sleep. But, I digress. I have decided to change the name of my blog. I don't know if I'll keep the name or not but it seems fitting. We seem to be at a calm in our lives and I no longer feel like we are on a roller coaster. Our house is settling out after the move and Logan's health seems to be settling into a routine. I no longer feel those really antsy feelings that I felt when he had lost his desire to live. I can tell at this point he has a desire to live and to see new things and to touch everything! His new found love is water. In all it's shapes and forms. He wants to touch it and play in it and drink it--judging by the 4-12 oz sippy cups he drank in a 6 hour outing. His favorite thing to do now is shower! He's allowed to take a shower on dressing change nights and he LOVES it. It's the only time he will nurse anymore and so I enjoy our shower times too. He puts his hands in the water and tries to throw it. I love seeing the smile on his face while he plays. Cristian and I are also settling into a good routine with school. His reading is really coming along now and I think he will catch up in no time. His math skills are very advanced but his reading was on the slow side. We bought a new curriculum and started second grade over again. We'll continue through the summer and I think we'll catch up to third grade in Sept or Oct. I'm not in a huge hurry. Rather than being left behind a whole grade, he has the opportunity to be behind by only 1/2 a year and to eventually catch up. Ahh...the joy of homeschooling. : ) Plus, after Logan's transplant we will be homebound or rather hotel rooom bound for a month so I'm figuring we will gets LOTS accomplished. Speaking of, I am getting rather inquisitive on how I will do with 3 little ones and either Vidal or my mom in a hotel room for 3-4 weeks when Logan won't be allowed in public places. Should definitely be interesting. I'm hoping to be able to borrow a laptop by then from my parents. Well, I am officially off to bed before the littles are awake again.

WOW.....

I did not realize until I was washing my hands this evening what today was. I have looked at the calendar many times today and the significance did not hit me. One year ago today Logan teetered on the brink of death. He fought death. Thanks to God and the wonderful NICU nurses and drs, namely Dr Ramsey and Dr Zia. And nurses Rose and Rosie for being thoughtful enough to have similar names when I hadn't slept in over 36 hours and had been through more turmoil in 16 hours than I had previously been through in my whole life. Everything was so surreal. From taking Logan in thinking that we were probably there for no reason to being told that he wasn't expected to live to flying to Corpus in a plane the size of a tonka truck. I remember the pilot asking if I had ever flown. In my daze I answered, "sure, in a real plane." I remember alternating between looking out the window and praying to looking behind me to Logan, waiting for something to happen, longing to hold him, and willing him not to die. It really would have been a beautiful sunrise had I not been in the plane with my dying son. But he didn't die. He was such a fighter. I remember the nurses trying desperately to get an IV in him and him fighting them with all his might. They knew what his labs said even though the labs made no sense to me at the time. They were so surprised that he had so much fight left in him. That should have been an indication to me that he was going to be okay. I remember holding him and singing to him while they tortured him and just wanting to grab him and run and say "nevermind!" I remember instead praying and singing to him. I remember excusing myself before I got on the plane to go to the restroom and spray enough milk out of my breasts to soften them just a bit thinking that I needed to save a milk supply for Logan. And then I remember thinking that I hoped he was able to nurse again. I remember seeing an old friend from nursing school there and saying hi and when he asked me how I was doing--telling him that it was my baby who was being flown out. He must have known how dire the situation was because he just looked down and said, sorry. I remember holding Logan and telling him he was going to be okay even though I was just hoping for it. I remember thinking that all of this was just a huge mistake because we had just been taking pictures at the mall earlier in the day. I remember after we got in Driscoll the nurses telling me that they would come and get me after he was stable and after shift change. I remember calling my friends to tell them what was going on, especially Ruth who I am grateful to for that fateful call. I remember calling Adrienne who had just left and telling her Logan wasn't doing so well. I remember when they led me to see Logan and they said I could go to him and being so upset with myself because all of the babies looked so much alike that I didn't know which was him and thinking that we may be losing him so little when I hadn't even really gotten a chance to know him. I remember looking at Dr Ramsey and her saying that our baby was "really sick." I could see in her eyes she didn't know if she could save him. I remember being so overwhelmed and disoriented with all the drs standing over my baby. I remember pumping for him and for the first time breaking down and crying. I remember being so happy when my mom, Vidal, and the boys finally joined me. It felt like a decade but was really only a few hours. I remember Logan's struggles and gains in the NICU. And I remember all of the wonderful nurses who took care of him and in a way took care of us too. I remember being told after 2 days that we could finally hold him again. I remember him taking his first ever bottle happily and being surprised that I wasn't sad but instead happy for him that he would finally have breast milk in his tummy again. I remember Ann who went to bat for me and asked the drs if Logan could nurse on an empty breast. I remember the boys seeing Logan for the first time after he got sick and them being so happy that he really was alive. I remember when he kept having seizures and look scared into my eyes. I remember Dr Freys doing his spinal tap and being so thankful that the phenobarbital had knocked him out so he wasn't in agony. I remember watching him gain weight in leaps and bounds right before my eyes.

I remember that this child is a special gift to our family and that I will always be grateful for the opportunity to know my child well enough that now I know I would recognize him from across a crowded room.

I thank Dr Ramsey for not feeling like Logan was too much of a challenge. I thank Ruth for listening to God and making the call that saved Logan's life. I thank the nurses and drs who took such wonderful care of Logan and who loved him and who made me feel okay about leaving my baby in their care. I thank Logan for bouncing back so quickly and for being such a fighter.

Today he took about 7 consecutive steps and he is such a miracle in my eyes. Logan, you have come a long way baby. Thank you for allowing me to come for the ride. Through all the struggles and low points, all the good times and beautiful smiles have been so worth it. I enjoy seeing your sense of humor shine through and seeing you become such a rough and tumble boy with your brothers.The morning of "the day"

The next day in the NICULogan's 1st bottle--he was so happy to have milk.Day 3 in the NICU--Logan loved this window behind him. We could see the ocean from it. When he first moved over to his new bed he couldn't sleep anymore. Jaden seeing Logan for the first time post hospital.
Cristian holding Logan for the first time post hospital.

Logan nursing for the first time post.

sleeping peacefully at about 5-6 weeks old.

Great Logey news!

As a lot of you guys already know, Logan's results came back on the genetic blood test for cystic fibrosis. And they are NEGATIVE!!!!!!!! YAY!!!!!!!!!! This test picks up about 90% of Caucasian strains of CF and 60% of Hispanic ones. So, the odds are definitely in his favor at this point since he has no signs (other than the bilateral absence of the vas). I am sooooooo excited! I doubt we'll even do another sweat test unless he starts showing signs. Even though it's not 100%, I feel like we're turning a corner. The lows seem to be lessening and I feel like everything's going to be okay. I haven't always felt like this. I have given it over to God and I'm not worried anymore. Careful. yes. Thankful for every minute we have with this child. Yes. But, worried? No. It's really a pointless emotion at this point. All I can do is my best and I pray that it will be enough. These little guys are so fragile in a sense. And then on the other hand they are such intense fighters. With everything they have to go through, they seem to do it with a smile on their face. If only I could be as strong as Logan and Matthew and Gavin and Aidan and the many others. God has given them quite a line to tow and yet they seem to do it so well. I know I could never be as strong as any of them.

I feel very hopeful tonight. While I know that transplant is still a long way away and even transplant is not a cure but a treatment option. But, I know that when we are done with dialysis, the time spent on dialysis will feel short. And really, in comparison to his lifetime it will be short. I talked to Matthew's mom today (Logey's baby dialysis partner in crime at the kidney center). He's still in the hospital but should be going home soon. Matthew is her first baby so she doesn't realize how much harder it is to have a baby on dialysis. It's normal for her. I hope that after all is said and done she finds the love of her life and in addition to Matthew she gets to have a healthy baby. She is an awesome mama! I feel for her, you can't get much sleep up there on the 7th tower. Hopefully they will be home tomorrow.

Logey weight update

He was up to 8.40 this morning. His highest ever was 8.43 but I have a feeling he'll be passing that in no time. He looks chunky again. I love it! He also took 3 steps on Friday and then took another 2 today. What a big boy I've got! What a blessing he is! I don't know what i would do without these little men here to make me smile. In other news, Logan's dialysis partner in crime(Matthew) is in the hospital. He seems to have a bad respiratory infection. Prayers would be lovely as these little guys go through so much as it is.

Poor little Bear

After I posted how well he was doing after surgery his incision decided to get a rash around it from the betadine and now he's been alternating between happy and miserable, no in between. He's SOOOOOO itchy. We were able to give him a few doses of benadryl and it really helped mostly because it knocked him out. I'm taking him in to see Dr Tiongson tomorrow to see if it looks like it's healing okay. It looks so-so to me.

A garden update

Our garden is coming along fairly well. The container garden part anyway. Meant to get stuff in the ground but that's slow going. But, our 2 tomato plants are doing well. One baby one I adopted last Thurs just doesn't seem to be making it after our long Corpus trip and it not getting babied. RIP tomato plant. Both of our strawberry plants are producing sweet small strawberries. We'll see if the roots plant I planted sprouts up. Our basil and cilantro have made a come back. Our big basil plant looks great. And best of all! Vidal replanted our grape vine and it's looking awesome! Here are some pics so you can see how much bigger out tomato plants are. We've harvested 2 tomatoes so far (well, Jaden took one green one off @@) but it looks like we should have a lot more soon.Our tomato plant, see how much it's grown!

Hanging strawberry plant. we had some yummy strawberries off it today!Our grape vine that has since been replanted.See the baby grapes? I'm so interested to see how they turn out.And our cute little baby plant helping out in the garden. See how he makes holes with the hole maker thingy.

Logey update

Let's see. where to begin? On Monday afternoon we were preparing to take Logan to the hospital for his clinic visit, etc. I changed his diaper at 5 pm and got his machine ready and was all set (for once) to get him on his machine early, at 6 pm. I noticed his side was a bit damp and checked his diaper. Hmmmmm...Nope. Completely dry. Then I checked our water dispenser to see if the kids had been playing in it. Nope. So I figured he must have gotten into the dog's water bowl. I finish changing his diaper and clothes and get him in a onesie for bed. Then I go to put him on dilaysis.............and notice a BIG tear in his catheter. Darn it! So, I called his dialysis nurse to let them know we were coming. Then I called my mom to tell her to pack now and Vidal to come home and help me pack up. Once we got there it was a bit crazy until we got everyone down for the night. His lovely dialysis nurses came out at almost midnight and changed out his transfer set and put an extension piece so he's all intact again now. We ran antibiotics for 3 days in his dialysate since a tear is a HUGE risk for infection. Then when we got to our room I realized somehow we forgot to bring his connection for his feeding tube. That was an ordeal and I was so worried since he needed his kaexalate and I knew he was probably starving. Luckily the nice man from Russel Medical came out to bring one to us at 1 in the morning. YAY nice man at Russel Medical! On Tuesday Logan had his clinic visit. Dr Al-Akash wants us to try Suplena on Logan since it has less potassium than Pediasure. He will now be getting 1 can of Suplena and 1 can of Pediasure plus whatever I pump and he nurses. Guessing about 7 oz total. This SHOULD help him gain some weight. Crossing fingers, toes, and even nose. Oh wait, guess not. Wednesday was his surgery to repair his hernia on the right side. It's all fixed and his scrotum looks so much more comfortable. Dr Almond did not find the right vas deferens as I figured he wouldn't. What this means: Logan will not be able to have children naturally, at least not until technology figures out a way to make a substitute. Sorry Gabby! Also, is an indicator of cystic fibrosis. Again. Sigh. Other than that, surgery went well and he was up playing within an hour. Thursday we went for his sweat test. Which was.......inconclusive. Again. This kiddo just does not sweat. I was sweating under him but did he sweat, no! Dr Al-Akash ordered blood work for the genetic variation of the test. I've decided that I'm going to go be tested to see if I'm a carrier. We rule out me being a carrier, we rule out cystic fibrosis. Logan's had a low grade fever through all this but he is such a trooper. He even went with us to co-op today because he was feeling pretty well. Co-op went great. I really feel like I'm getting to know more people there so that's great. Cristian is having a blast in his science class! We ordered him a new 2nd grade curriculum this weekend because I just didn't feel like what we were doing right now was working as well. So, we'll see how it goes. I think we can get through it pretty fast and be caught up for third grade by Sept or so. Jaden likes his class too though I wish it was more of a preschool class. Since he's 3 he's in the nursery and I think while he likes playing with the toys, he can do that at home. I'm thinking of putting him in Gymboree's School Skills class since Logey hasn't been able to go to Gymboree in like 3-4 weeks. Anyway, here are some pics of the kiddos on our way home from Corpus.I was having trouble getting the kids to look at me so I didn't get any truly great shots.

Cristian--He's seen so rarely on this blog.Logan was clapping.Jaden. : )Logan opening up his present from Dr Al-Akash at home. It was a really cute Fischer Price Piano. I'll get a pic of him playing with it later.

Next week

This will be a very busy week for our littlest family member! Tuesday we are driving to Corpus and Logey will have his (hopefully) final sweat test at 10 am. Then he has an iron infusion at 11 am. Then he will have his normal visit--talk with Julie (his nurse), Carol (dietitian), Leticia (social worker), and then Dr Al-Akash. Hopefully it will be an uneventful visit. His labs were decent this week so I think it will be more of "needs to gain weight--he looks adorable, etc." We have to get him on the machine early on Monday night (and Sunday night) because he has surgery Wednesday morning to repair his hernia. I'm sure it will all go well. It's a pretty simple surgery. While Dr Almond is in there he will check for his right vas deferens. Then hopefully Thursday if all goes well with dialysis Weds night we will come home. Prayers and good thoughts would be much appreciated. Depending on what the sweat test shows, it could be an emotional week. I will try to update as soon as we get home.