Wednesday, February 16, 2011

Andrew and the walker

The boy without a cerebellum

This was a pretty amazing story I took from a blog  I follow  This little boy does not have the same diagnoses as Jacob, but hey this boy is missing his cerebellum and Jacob is missing his peridal lobes. You never know what could happen. :-)

Oligoastrocytoma Oligodendroglioma astrocytoma

This is my friend Christine's official but unofficial diagnoses until we get the full detail on the 22nd. Oligoastrocytoma Oligodendroglioma astrocytoma.

oligoastrocytoma (AH-lih-goh-AS-troh-sy-TOH-muh) A brain tumor that forms from both oligodendrocytes and astrocytes, which are types of glial cells (cells that cover and protect nerve cells in the brain and spinal cord and help them work the way they should). An oligoastrocytoma is a type of mixed glioma (glioma (glee-OH-muh) A cancer of the brain that begins in glial cells (cells that surround and support nerve cells).)

oligodendroglioma (AH-lih-goh-DEN-droh-glee-OH-muh) A rare, slow-growing tumor that begins in oligodendrocytes (cells that cover and protect nerve cells in the brain and spinal cord). Also called oligodendroglial tumor.

astrocytoma (AS-troh-sy-TOH-muh) A tumor that begins in the brain or spinal cord in small, star-shaped cells called astrocytes.

So this is what  I get out of it...she has a fucked up mutated partially cancerous partially benign (noncancerous) tumor of the lower part of her brain originating from nerve cells in the brain stem/spinal cord. It is rare and slow growing and apparently look like a round blob. She says it is round with little root like things coming from it attaching itself to the surrounding brain tissue, but has no defined edge...there is no membrane holding it together...lets give an example no shell around the egg yolk.

So I created this fun little blog for her to tell her story on so all the nosey people can keep up to date, but she has yet to do anything to it. I even named her tumor for her..its name is Ethel. So this is the link SHE WILL BE USING ONE DAY OR I WILL BREAK HER FINGERS :-) (must imagine me saying this while my eye is twitching)This is the future link to her blog:

This is Ethel. Isn't she cute? We are going to kill her with lots of radiation and chemo.(well at least try to stop her from growing)  Bye Bye Ethel!!!!!

I have also set up the Disney day. We are 100% going unless she is to sick or in the hospital on Febuary 23rd. I decided I am going with her.  I DO have 3 of the tickets provided and have had offers of money donations to help with the other 2. Still excepting any form of donation toward Disney or her personal needs. Thank You to those who have already donated through paypal. What a blessing you have been. None of the money donated is going to me or my family going to Disney we will have passes :-)

Monday, February 14, 2011

Still needing help

1st I wanted to update Ava's 1st ever dentist appointment. She went last Thursday. She did so good. They took her back by herself and made me wait in the lobby. She did not even cry. They told me she let them get all the x-rays they needs and did not give them any issues while they cleaned her teeth. The dentist took a picture with her. They gave me the picture and a letter from the dentist for her baby book and Ava got several stickers and a ballon. She has no cavities and her  teeth are in perfect health. :-) She loved the attention I think. She asked me the other day if she could go back to the dentist because her teeth need to get sparkley again. LOL

Jacob made it a record 1 week without vomiting. My sister said he went into a coughing fit today and threw up 1/2 of his feed earlier. Hope he is not getting sick again :-/

Now onto the next topic: I am still trying to help my friend out by get her and her family to  Disney before she starts Chemo. She is still set to start treatment on the 23rd. We are now aiming for this Wednesday. Less than 3 days from now! I have had several people offer to help, but have not heard back from them. Hoping and crossing my fingers that our friend will be able to provide 3 tickets still. I have also had a few people offer to donate money toward the other 2 tickets needed. Tickets are around $75-80 each I think. Give or take. I am also accepting any donation of house hold items for their family, hand sanitizer, sanitizing wipes, toilet paper, tissues, cleaning supplies to have a clean germ free house when your immune system is wiped out. :-/ She has applied for I guess disability benifits, but has not heard anything yet. This family has NO income. No food stamps NO WIC etc. Yes, these things hopefully will be coming soon, but right now they have nothing. Car payment is behind, car insurance is going to be late etc..They are living with her father who is retired and is living on a very tight income himself. He has opened his home to her family of 5 to help with the efforts of trying to save her life. Never asked for money before, but I figured what can it hurt. Anyone that wants to help even if it is a $1 please do. All donations will go directly to my friend Christine while she is fighting for her life getting treatment for a deadly brain tumor.

Wednesday, February 9, 2011

18 month check up

Not a lot to report but here goes

Andrew is 32 inches long and 23lb. This puts him in the 11%He is doing well. He is officially off all formula and on whole milk. The things he needs to improve on is 1. walking! 2. he is apparently suppose to be able to recognize atleast 2 body parts.

Jacob is 32 inches long and 22 lbs 12oz  This puts him in the 9%. Nothing new for him. He does tuck his chin when you pull him up  instead of extending and letting his head fall back. He is doing well. I am continuing to increase the rate on his bolus feeds we are at 150cc an hour today and he is also tolerating 32oz instead of 24. Not sure if this is just a fluke because he is NOT SICK for once, or if the new formula Vital Jr. is actually helping. Next week if he is still doing well we will start puree foods through the g-tube and possibly some very very very tiny amounts of by mouth baby food. We will see staying optomistic.

Thanks to everyone who has offered to help make the "Disney Day" possible for my friend's family. This will be such a great blessing for my friend and her family to go to "the happiest place on earth." It is my favorite place to go. It always makes me feel better when I go no matter what is going on. It is an excape into a magical place where you don't have to think about "life." I think I have 3 of the tickets covered so far. My goal is to get them to Disney this Saturday. I am also working on getting them some spending money for food etc while they are there.

Still needing prayers and miracles

I guess I will start with the good news 1st. Jacob has made it an entire week with only 1 vomiting episode. He had an endoscopy done yesterday morning (Monday). The results were good she said everything look fine structurally. They placed a Ph Prob. He spent the night in the hospital and I was suppose to record when he was sitting up and laying down. I had to record when his feeds started and stopped. Jacob is the healthiest  I have seen him in months. This is great! but......he is not showing any symptoms of reflux now..which is also great, but what happens next time he gets super sick for 3 months strait we will be right back at the beginning. Grr. He hardly cried. He did not "look like" he was refluxing even once. He did not arch. He acted like their was nothing wrong with him. This is great as long as he stays this way. It will be an answer to many prayers. It will be great to avoid surgery, but it does not set me at ease thinking about the next trigger that will set him off. I am trying very hard to stay positive and faithful, but the world around me is crashing down. I am praising God that Jacob has had relief from his illness. He looks and feels great. You can even tell he is putting on some weight. He is getting fat little cheeks and hands.

Now for the not so great news: I ask my friends if you can say a prayer for these families and possibly advice or help...

 Family 1: Johanna and Sean go to my church. They are expecting their 1st child. A little girl. She has been battling very high blood pressure since early on in her pregnancy. She is 20 weeks right now. Her pressures are not staying down and they are saying her baby is not growing. They are not giving these new parents much hope on their little girl surviving. I ask that you pray for this family. They need a miracle that only God can provide.

Family 2: I have recently blogged about her. My friend Christine has a brain tumor. She found out today that her tumor is indeed very rare. Not sure if my information is correct and if it is not I will update when I am corrected. She said her dad talked to the doctor today about the results from a biopsy done a few days ago. She was told that part of the tumor was cancerous and part was not :-/ The tumor is the size of a golf ball and it is growing from her brain stem (you need this to live) She will know on Thursday what the game plan is. All we know right now is that they are going to try and treat this monster. If it was not cancerous then their is nothing they would be able to do for her. They can't remove it so if it continued grow she will die. So cancer in a way is actually good....I know they are going to radiate this monster and do chemo and they will be starting very soon. She is weening off steroid medication and is not feeling wonderful right now, but she wants to have a special day with her family. She told me before she came to Florida that she wanted to take her kids to Disney "before anything happened". I wanted to pay for her to go, but I do not have the funds in the next 2 weeks to make this happen. They are talking about treatment very soon. I would love to see their family of 5 enjoying their 1st trip to Disney. This is my goal this week to find anyone willing to help this happen. I am looking of Disney employees that have the ability to get people in for free. I know a few people and I have written them, I just wanted to spread the word to see if their was anyone else out there willing to help if the people I have in mind are unable to help.

I can't even talk to her about what is going on without hyperventilating. I don't even know what to say to her. I love her so very much. I hate that this is happening to her and her family. I think what makes it hurt so much is that we are almost the same age and our daughters birthdays are days apart. What if  I had to tell Ava that mommy might not be there with her anymore 1 day. I feel like my heart is being torn for my chest and it is not even happening to me.

Christine, you have a lot of people who love you. Only God can move mountains, but his prayer warriors will be standing behind you every day until God's will is done. We will all hope and pray God's will if for you to continue your walk on Earth with your children, but please know that no matter what God's will may be you that you are loved and everyone will be okay no matter what. I can't even think strait right now and heck I can't see what I am writing through the tears. My heart is always with you. I will be here for you through every step of this journey. Don't be to so proud! Ask for help when you need it! This is a time for spiritual and emotional growth for you, your family and your friends. God makes miracles happen. Sometimes they are not what we thought they would be, but none the less they are miracles. Me of all people can share a testimony of God's will and things not turning out as planned. What happened to my family is still a miracle. Logan's life was a miracle and a blessing. Jacob, Andrew and Ava are blessings. I expect to see miracles in Jacob. He is a miracle every day he wakes up. God left him here for a reason just as he took Logan for a reason. My heart knows these reasons I just can't put it into words. What is happening in your life is something no person would want to face. Lean on our Father. Without him their is nothing. I pray that God give the doctors and nurses the knowledge to do exactly what needs to be done to beat his. I pray a year from now you will be cancer free and thriving. I pray that your relationship with God be unbreakable. I pray that he lifts you and your husband up and holds you while you battle this storm. That your heart will be humbled and that your family's faith will be unbreakable.

I ask you friends to lift my friends up in prayer. Add them to your prayer lists at your churches. Post them on your facebook. These families need an act of God to get through these trials.

Friday, February 4, 2011

Jacob's eyes

I have a little bit of good news to report for once!
Positive note #1: Jacob had his 3 month follow up with the low vision doctor today. We reported that he has started crossing his eyes again with or without the glasses on. He examines his eyes and determined that his eye sight is actually improving! She said his farsightedness has regressed (I guess that would be the word) by 20%. In sense he is not as farsighted as he was before. So now we wait for another new pair of glasses. Ever since he got glasses in the 1st place I really have not noticed a difference either way. The doctor says as a baby grows his eyes grow and their vision changes often and it is hard to keep them in the right prescription. The low vision therapist swears she sees improvement, but I am still unsure. Well for one reason I have the hardest freaking time keeping his glasses on. He is really good at getting them off.

Positive note #2: He is definitely getting better. He is less congested and he is breathing a lot better. We also got our home suctioning machine today. :-)

Positive note #3: Knock on wood he has not vomited in at least 3 days now. Not even a little. I know what it is...we have the 24 Ph Prob on Monday and the endoscopy...he is going to act perfectly normal until after the testing so I look like a big fat liar and then start projectile vomiting all over again...I might just need notarized letters from everyone who has seen his vomiting ;-P LOL

Andrew has mastered the art of climbing on the couch. He has given me several small heart attacks today from his crawling down the couch like it is a runway escapades. He has also mastered the word "Thank You" He is so cute he handed a paper back and forth to me over and over again saying Thank You Thank You.

Ava told me today at nap time about all the babies in her belly...:-/ They all had their own exotic name and color....sometimes I worry about this child. LOL Then she told me about all the babies in my belly and named them too...apparently this week I have "4 n 5" I'm not sure this child understands they are only "suppose to" come 1 at a time. :-) Then she proceeded to tell me about each baby and which ones were good helpers and the ones that mess up everything and don't pick up after themselves etc...she literally rambled on about all the "babies" for 20 minutes describing in detail about each baby in our bellies.

Well Jacob and me have to be at St. Joseph's bright and early on Monday at 7am.. I will update after we have the results.

Oh and what a good mother am I...I finally scheduled dentist appointments for Ava and Jacob :-) for Thursday

UPDATE***yeah Jacob decided to puke all over Jack tonight after I wrote this :-)

Note the bib...LMAO I seen it and had to buy it :-)

My children NOT sleeping like they should have been

This is what happens when you take my babies, another set of triplets and a 3 year old to Olive Garden and the kids out number the adults 2-1 :-) Note there is only 1 kid left in the high chair (Jacob) and the 4th baby had already excaped from under the table and was making their way out of the area...

Wednesday, February 2, 2011


Jacob had a pulmonologist appointment yesterday. 1st 1 her has had  in months. His lungs were still sounding pretty junky when she seen him. She is starting him on atrovent. She increased his Flovent dose and wants him on an albuterol puffer 2x a day. This is Jacob's new medication list: Ugh!

AM: Syntroid 12.5mcg
        Klonipine 0.5mg
        Triliptol 200mg
        Flovent 2 puffs
        Ventolin 2 puffs (and every 4 hours as needed or albuterol neb instead of inhaler)
        Atrovent 2 puffs (or Atrovent neb 1/2 vial)
        Zantac 1.5ml
        Oral Steroid 3ml

Afternoon: Klonipine 0.5mg
                 Zantac 1.5ml

PM: Klonipine 0.5mg
       Triliptol 300mg
       Zantac 1.5ml
       Ventolin 2 puffs (and every 4 hours as needed or albuterol neb instead of inhaler)

       Atrovent 2 puffs (or Atrovent neb 1/2 vial)
       Flovent 2 puffs
       Oral Steroid 3ml

Needless to say I am tired of giving medications and nebulizer treatments.

Jacob has been waking up crying for hours in the middle of the night. I was awake with him from 2:30 until 6am. He acts like he is in a lot of pain. I can't really tell what is hurting him though. He arches and screams so it leads me to believe it is his stomach hurting, but he has been on a continuous feed at 40ml an hour for days now. I have not messed with it. No attempts to bolus or give baby food. I have been trying to leave his feeds alone and deal with the none stop charging of the battery and him being attached to a bag. He has several teeth coming in as well. His gums are swollen and he can't teeth like other babies do. I put a pacifier in his mouth while I held him for HOURS early this morning and sucked and chewed on it a little.

Yesterday he seemed to have been doing better and I didn't bother cancelling his therapies for today. Well, he had other plans he was so congested and was having trouble breathing. After several neb treatments, a steam shower, and suctioning he has finally went to sleep, but the therapist were unable to work with him at all. He screamed and cried the entire time.

Andrew is still sick too, but he holds his own. He has a bunch of new teeth coming in. 1 of his back teeth has totally came through and he is working on getting 3 other teeth that have just come through the gums. Poor miserable babies

Ava is still doing okay. She has discover cell phone games...ha I can't keep my phone charged. Kinda cute watching her figure out.

I hope next week is a better week. This week has attempted to be comparable to last year at this will never compare to what happened last year, but dang I wish this could have been a happy week rejoicing in Logan's life not fighting off RSV!! Man I am tired.

I'm done complaining now and I will rejoice in what God has blessed me with after a nice nap :-)