This afternoon my Sweet Jeremiah started to show that adorable smile again! Hopefully he'll be back to his normal self tomorrow. His winkie is finally starting to heal and the ring from the plastibell has just about fallen off. (Oh my, the gross things a Mama can do for her baby!) I've been trying to let it "air out" for lack of better words and I've been peed on 4 times now! He just laughs... Crazy kid!
Jeremiah had play therapy this morning and he got to get messy for it. I put him in his bumbo and put baby food on his tray and let him put his hands in it. It's suppose to encourage hand eye coordination and hopefully help him learn how to feed himself. He had baby food EVERYWHERE, but he enjoyed it and that's all that matters! Wish I would have taken a picture of it... But I didn't even think about it. I just sat and enjoyed watching him being so content in playing.
So, today was much better than the last several days have been. Jeremiah is my world and I'm so blessed to be his Mama. This road that we're on hasn't been easy, we have our good days and bad days, but I wouldn't trade any of it. I've become so strong because of my beautiful little boy. He's my biggest hero! He amazes me more and more everyday!
Tuesday, May 31, 2011
Monday, May 30, 2011
Who's responsible!?
Is the tooth fairy responsible for teething? Because if so, she is fired and she needs to return my sweet Jeremiah ASAP!
Is has been a ruff couple of days for my little guy... with teething and being circumcised, WOW! He has learned how to scream, throwing tantrums, and even waking up at night again. It's even got to the point of raring himself back out of his bumbo and holding his breath while crying. Maybe this is typical baby stuff?? But not my sweet Jeremiah! He has never been a fussy baby except for while in the hospital during Nov/Dec. That's why the first thing I'm doing is constantly checking his soft spot and measuring his head. I FREAK myself out about this stuff, but it's the first thing that comes to mind. Does it ever change?!
His winkie is looking pretty red so I emailed a pic to the doctor this morning. He did his circumcision using a "plastibell" so if the plastic part hasn't fallen off by Wednesday I'm suppose to call him back. I'm not sure what he'll do, but I'm guessing a trip to see him. I'm praying it falls off before then. It was horrible seeing Jeremiah cry like that. The worst part was the numbing before the procedure. I must say I consider myself a strong Mother. I have been there every step of the way, through everything he has had to endure. I will not ever make him go through something without me unless I'm just not allowed to be there. It isn't easy, but Thank God for giving me the strength to be always be by his side.
Hope everyone had a great Memorial day! We spent the day with family and ended the afternoon making homemade ice-cream with chocolate syrup and fresh strawberries! YUM!
Attached is a pic of Jeremiah deciding it was time to play at midnight. Silly boy, had to tell him this wasn't going to happen every night, but since he was so smiley I let him stay up a while. : )
Is has been a ruff couple of days for my little guy... with teething and being circumcised, WOW! He has learned how to scream, throwing tantrums, and even waking up at night again. It's even got to the point of raring himself back out of his bumbo and holding his breath while crying. Maybe this is typical baby stuff?? But not my sweet Jeremiah! He has never been a fussy baby except for while in the hospital during Nov/Dec. That's why the first thing I'm doing is constantly checking his soft spot and measuring his head. I FREAK myself out about this stuff, but it's the first thing that comes to mind. Does it ever change?!
His winkie is looking pretty red so I emailed a pic to the doctor this morning. He did his circumcision using a "plastibell" so if the plastic part hasn't fallen off by Wednesday I'm suppose to call him back. I'm not sure what he'll do, but I'm guessing a trip to see him. I'm praying it falls off before then. It was horrible seeing Jeremiah cry like that. The worst part was the numbing before the procedure. I must say I consider myself a strong Mother. I have been there every step of the way, through everything he has had to endure. I will not ever make him go through something without me unless I'm just not allowed to be there. It isn't easy, but Thank God for giving me the strength to be always be by his side.
Hope everyone had a great Memorial day! We spent the day with family and ended the afternoon making homemade ice-cream with chocolate syrup and fresh strawberries! YUM!
Wednesday, May 25, 2011
Unable to say it...
Second day patching Jeremiah's eye went better, he managed to go about 15 minutes without fussing, but I didn't force him to try it twice today. He worked so hard with OT today that I didn't want to overwhelm him since we had church tonight and also because he's getting circumcised tomorrow, but I'll get to that in a minute.
So, tonight at church we had a guest speaker and turns out he has a special needs child. I don't know why, but right away I feel a connection to a person as soon as that is mentioned. Why?
I can't seem to come to grasp that my child IS special needs because to me, he is a "normal" baby. Yes he has medical issues and he is delayed, but I can't get myself to say "special needs". Maybe it's because I don't know if he is going to be labeled special needs, or I pray everyday he isn't. Is it too much to hope that my child will grow up to be a "normal" and be in a regular class room? Or one day lead a "normal" life?
When do you actually come to realize whether or not your child will do these things? This whole waiting process is HARD! Or maybe deep down in me I believe that he will be in a mainstream class and continue to develop normally when he gets caught up on all his milestones... Sometimes I just wish I had the answers and could foresee what the future held, but I don't and I guess in the end that does make me stronger. I believe that how hard you push your child has a lot to do with how they will develop, I know by far it doesn't overall depend on how things turn out because some children are just unable to progress depending on how severe their issues are, but I do believe that even at Jeremiah's age, he pushes against me to see when I will back down and not make him try harder. I have to admit that I am VERY hard on him and at times I just have to cry along with him. I want him to be the very best he can be and do the very best he can do, so if that means that he doesn't like at times then so be it, but one day he will thank me (hopefully).
On to being circumcised... He is going at 8 in the morning and I actually found a doctor how will do it without putting him to sleep. Jeremiah tends to get sick from the anesthesia and sometimes his oxygen drops, so I definitely preferred he not be put to sleep.
I've been informed that they will numb him and keep him occupied with a sucker while doing it. I pray for strength to get me through this tomorrow and that he won't feel any pain or be traumatized by it. I probably will go back with him, even though I've heard not to. There hasn't been a procedure other than his surgeries that I haven't been there with him and I can't imagine I would start now. As hard as it will be, I will get through it because he will not have to be alone with people he doesn't know.
I'll update tomorrow on how this experience goes. Send up prayers for us please. God Bless
So, tonight at church we had a guest speaker and turns out he has a special needs child. I don't know why, but right away I feel a connection to a person as soon as that is mentioned. Why?
I can't seem to come to grasp that my child IS special needs because to me, he is a "normal" baby. Yes he has medical issues and he is delayed, but I can't get myself to say "special needs". Maybe it's because I don't know if he is going to be labeled special needs, or I pray everyday he isn't. Is it too much to hope that my child will grow up to be a "normal" and be in a regular class room? Or one day lead a "normal" life?
When do you actually come to realize whether or not your child will do these things? This whole waiting process is HARD! Or maybe deep down in me I believe that he will be in a mainstream class and continue to develop normally when he gets caught up on all his milestones... Sometimes I just wish I had the answers and could foresee what the future held, but I don't and I guess in the end that does make me stronger. I believe that how hard you push your child has a lot to do with how they will develop, I know by far it doesn't overall depend on how things turn out because some children are just unable to progress depending on how severe their issues are, but I do believe that even at Jeremiah's age, he pushes against me to see when I will back down and not make him try harder. I have to admit that I am VERY hard on him and at times I just have to cry along with him. I want him to be the very best he can be and do the very best he can do, so if that means that he doesn't like at times then so be it, but one day he will thank me (hopefully).
On to being circumcised... He is going at 8 in the morning and I actually found a doctor how will do it without putting him to sleep. Jeremiah tends to get sick from the anesthesia and sometimes his oxygen drops, so I definitely preferred he not be put to sleep.
I've been informed that they will numb him and keep him occupied with a sucker while doing it. I pray for strength to get me through this tomorrow and that he won't feel any pain or be traumatized by it. I probably will go back with him, even though I've heard not to. There hasn't been a procedure other than his surgeries that I haven't been there with him and I can't imagine I would start now. As hard as it will be, I will get through it because he will not have to be alone with people he doesn't know.
Tuesday, May 24, 2011
Busy May
I started this blog hoping to keep up with how things are going but... FAIL! May has been extremely busy with doctor appointments, therapy, and every day life. Lets see where to begin... We saw Jeremiah's Neurosurgeon and Neurologist at the beginning of the month and the appointments went great overall. His Neurosurgeon was very impressed that Jeremiah is doing as good as he is. I think he was more impressed that his shunt hasn't malfunctioned because of his extremely high protein levels. But Praise God for NO MALFUNCTIONS! He has definitely heard this Mama's continual prayers!
She informed me that his PVL was mild (which I am extremely thankful for) but I could have done without her other information. Evidently she had spoke with the Neurologist after our appointment and she seems to think that Jeremiah's ventricles are pretty much going to stay the size they are and the brain isn't going to "fluff" back out because his brain is damaged. BUT only God knows what his brain is going to look like a year from now and I pray that they are WRONG!
We've also seen his Ophthalmologist this month and he said that he is pleased with Jeremiah's progress as well. His eyes aren't turning as much, but that his right eye is definitely weaker, so we are to patch it twice a day for 30 minutes. Today was our first day doing that because he has been fussy and hasn't felt well because we he is currently cutting his 2nd tooth. The first attempt this morning didn't go so good, but this afternoon he did really well and even held his toy with his right hand for a while, which is a big improvement. I'm hoping that the lack of interest in using his right hand also has to do with his right eye being weaker and maybe once it gets stronger he'll do more with his right hand.
So yeah, that's what our month has consisted of. Hopefully I'll post regularly and then my post won't be as long.
Tuesday, May 3, 2011
Life as we know it...
You may wonder why I say that I'm a "Mama to a Miracle"?? Well he truly is a Miracle, even from the very beginning... I got pregnant with him the very next month after a miscarriage, the doctor told me that it probably wouldn't happen right after. Well God had other plans!
My pregnancy with him went very well, although I had to take Progesterone for most of my pregnancy and other than having shingles around 16 weeks, it was very uneventful. UNTIL- He arrived!
My water broke at 6:50p on my Husband's birthday but Jeremiah was determined he didn't want to come out. After, being in labor for several hours, and not progressing past 1cm with very strong contrations, Jeremiah's heart-rate started dropping around 4:00a. My doctor came in at 7:00a that morning and I was told that I needed an urgent c-section. Jeremiah was delivered by c-section at 9:03a, he was PERFECT and GORGEOUS, other than the horrible bruises on the side of his face and head. The doctor had a hard time getting him out and unfortunately, had to use forceps to assist because he was stuck.
We didn't know at the time, but the doctors were monitoring his head size because of the brusing. Later that night, Jeremiah's doctor came in to tell us that he was going to be sent for a CT of his head. Unfortunately we didn't get good news, but it brings us to where we are today.
Jeremiah suffered a grade 3 brain bleed, which inturn caused Hydrocephalus (which means: fluid accumulates in the brain, enlarging the head and sometimes causing brain damage) and Periventricular Leukomalacia(PVL) (which means: death of white matter near the cerebral ventricles due to damage and softening of the brain tissue). He has a VP shunt which drains the fluid from his brain to his belly.
He had his first shunt placed at 2 weeks old, developed an infection at 5 weeks, which caused meningitis and was hospitalized Nov 25th and had to have his shunt removed and an External Ventricular Drain(EVD) (which means: a device somewhat similar to a shunt, functioning on the outside of the body OR my definition- A NIGHTMARE!). He had his second shunt placed on Dec 21st and has been doing amazing ever since.
He is behind developmentally but he WILL get there. He receives Play, Occupational, and Physical therapy weekly and Vision therapy twice a month.
I'm basically making this blog to keep myself sane. I am blessed to be on this journey with him. He has changed my life from the moment God chose me to be his Mama.
My pregnancy with him went very well, although I had to take Progesterone for most of my pregnancy and other than having shingles around 16 weeks, it was very uneventful. UNTIL- He arrived!
My water broke at 6:50p on my Husband's birthday but Jeremiah was determined he didn't want to come out. After, being in labor for several hours, and not progressing past 1cm with very strong contrations, Jeremiah's heart-rate started dropping around 4:00a. My doctor came in at 7:00a that morning and I was told that I needed an urgent c-section. Jeremiah was delivered by c-section at 9:03a, he was PERFECT and GORGEOUS, other than the horrible bruises on the side of his face and head. The doctor had a hard time getting him out and unfortunately, had to use forceps to assist because he was stuck.
We didn't know at the time, but the doctors were monitoring his head size because of the brusing. Later that night, Jeremiah's doctor came in to tell us that he was going to be sent for a CT of his head. Unfortunately we didn't get good news, but it brings us to where we are today.
Jeremiah suffered a grade 3 brain bleed, which inturn caused Hydrocephalus (which means: fluid accumulates in the brain, enlarging the head and sometimes causing brain damage) and Periventricular Leukomalacia(PVL) (which means: death of white matter near the cerebral ventricles due to damage and softening of the brain tissue). He has a VP shunt which drains the fluid from his brain to his belly.
He had his first shunt placed at 2 weeks old, developed an infection at 5 weeks, which caused meningitis and was hospitalized Nov 25th and had to have his shunt removed and an External Ventricular Drain(EVD) (which means: a device somewhat similar to a shunt, functioning on the outside of the body OR my definition- A NIGHTMARE!). He had his second shunt placed on Dec 21st and has been doing amazing ever since.
He is behind developmentally but he WILL get there. He receives Play, Occupational, and Physical therapy weekly and Vision therapy twice a month.
I'm basically making this blog to keep myself sane. I am blessed to be on this journey with him. He has changed my life from the moment God chose me to be his Mama.
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