Wednesday, January 25, 2012

MRI results and next steps

steve and i had very mixed feelings about today's appointment. after jacob's last appointment we felt like we would be told one of 2 things today. 1. the MRI showed that there is a brain injury and jacob has cerebral palsy (which according to the neurologist at the last appointment that would be the BETTER option and the most likely option). or 2. the MRI showed nothing and we need to continue testing and look for a metabolic disease. we had been told that the next step would be a spinal tap.

both options sucked. we were of course wanting the MRI to show nothing AND for the doctor to say that he wasn't going to test jacob any more. however, this seemed like an unrealistic option since we had been told that he would NOT grow out of the symptoms he has.

in the past 3 months we have noticed that the shaking in jacob's arms has been less and less noticeable. in fact, in the past couple of weeks i have only seen his arms shake a few times. the shaking used to happen VERY often (probably at least 30x/day). the stiffness in his legs is still an issue. he does not bend his knees when standing (and he loves to stand). you can try and bounce him on a soft surface to get him to jump and his legs stay very stiff and he will not bend his knees. it's also difficult to get his knees to bend when changing his clothes and when he is very excited his whole body stiffens. the stiffness was the neurologist's main concern at the appointment in october.

today we saw the doctor again. he immediately said that he is SHOCKED that jacob already had his MRI. he told us that he expected it to take at least 1 year. he asked us some questions about jacob's development since his appointment in october. he then told us that the MRI was 100% normal and showed that jacob's brain is "perfect". amazing words to hear! (although at this point both steve and i were freaking out on the inside because we were expecting to hear that he has a metabolic disease.) he told us that jacob is only slightly behind on his development now and to him jacob doesn't feel as stiff as he did a few months ago. if he had a metabolic disease we shouldn't see a decrease in his symptoms. the next part was THE BEST! he said "i guess i was wrong. he will probably grow out of these symptoms." BEST WORDS WE COULD HAVE HEARD!!!!!! he was wrong. there is a third option and jacob is growing out of the stiffness. no cerebral palsy and most likely no metabolic disease. he told us that even though we don't know what is causing the stiffness he isn't worried about it after seeing jacob today. he does want to follow up with us and see jacob again when he is 18 months old or if we notice anything unusual with the stiffness or his development between now and then.

Tuesday, January 24, 2012

jacob @ 8 months...

...can do many new things!

he can sit up all by himself
(but we still need to stay nice and close because he does occasionally tip)

he can hit his toys together

he can go from a sitting position onto his belly....just not very gracefully

he pivots on his tummy

one thing is still the same though....he is still THE CUTEST!

Monday, January 9, 2012

post MRI

first of all i would like to thank all of our amazing friends and family who were thinking of us, praying for us, wished us luck, sent us texts, phoned us and/or wrote us on facebook today. THANK YOU ALL SOOOO MUCH!!!! we couldn't ask for better people in our lives and we felt so blessed today to know that so many people had us in their thoughts.

we have been stressed and anxiously waiting for this day for 3 months. we are really happy to have it behind us. here is what our day and the days leading up to today looked like. ** if you want background info as to why this MRI was necessary click here.

last friday the hospital called to give me instructions. we were told that he could not have any formula for the 6 hours prior to the test and he could only have water or apple juice up to 2 hours prior. we were also told that there should be 2 of us so that on the drive home one of us could be in the back helping jacob because he would most likely be vomiting. awesome. jacob really hasn't had any water before so i tried giving him some on the weekend but he would not drink it. i went and bought some apple juice (from the baby food section) and mixed a little bit in with some water and tried to feed that to him last night. he threw up all over our couch and carpet.....he has never vomited before!! shoot!! i was now at a loss. how is it going to be possible for him to go from 4:30am-10:30am without eating??? jacob is a kid who usually starts getting whiny 3 hours after a feeding. he was not going to last 6 hours!! this was a big stresser for me because i didn't know what to expect and knew that i wouldn't be able to fix it. i hate not knowing what to expect and not being in control (am i ever really in control though??....nope)

jacob went to bed last night. i madly packed everything i could think of that we might possibly need taking practically every worst case scenario into account. i had toys, a blanket, receiving blankets, wet and dry cloths, a plastic bib, 2 garbage bags, toys, 4 bottles, formula, mum mums, 2 changes of clothes for jacob, a new top for both steve and i (in case he barfed on us), apple juice....i am sure there was more but i think you get the picture. i was prepared! we went to bed and set our alarm for 4:15am.

i barely slept all night. i was up feeling sick because i was crazy nervous and could not put my mind to rest. 4:15 came. we fed him more than he normally eats in one feeding and tried to get back to sleep. no such luck for either of us. we got up just before 7. i tried to get water into jacob. he wouldn't take it. i tried a water and apple juice mix. he wouldn't take it. steve tried. nope. we tried spoon feeding it to him and he took 2 spoonfuls and started crying. he would cry, i would put a spoonful in his mouth while he was crying and it would all pour out. dang.

we put a very hungry jacob in the car at 8:15am and i knew we only had 15 mins to get clear fluids into him before he wouldn't be allowed anything else to drink. i decided that there was no point trying to force feed him. he was miserable already and i was only making it worse by trying to make him drink something he didn't want to. he was fussy for half of the drive to children's hospital. he finally fell asleep 20 mins before we arrived.

we suited jacob up in his hospital gown (i don't think anyone could possibly look so good in a hospital gown).
the nurse put his hospital bracelet on his ankle. jacob loved playing with it and eventually got it off his foot! she also put some numbing cream on his right foot and hand so that the IV wouldn't hurt as much.
she tried to take his blood pressure but he was way too squirmy. then she tried to listen to his heart and he had the hiccups and was moving so much that she had a lot of trouble. finally she weighed him and because he was moving a ton his weight fluctuated by 2 lbs. we could not get him to stay still. everything was new and he wanted to see it all and touch it all.

we then went into the waiting room until someone came and called us to radiology. again we waited (for another 45 mins....we were 30 mins past his appointment time when they finally came for him). they told us that we couldn't go with him because he wasn't a year old yet. we were both sad and relieved to get that news. we didn't want to see him in pain when they did the IV but we also wanted to be there with him to try and comfort him while he was getting the IV done. we were sent to a waiting room and told that he would be out in 20 mins but "don't panic if you don't see him for 25-30 mins." there was a sign in the room that said that in case of an emergency the wait could be as long as 1 hours. we waited....30 mins passed, nothing. 40 mins, nothing. 50 mins, nothing. 1 hour hit and i was ready to freak out. finally a nurse came in and called "JACOB'S PARENTS?" we hopped up and were told to go to the "post anesthesia" room. we (sped) walked down there. the room was one big open space with 8-10 beds. each bed had a child in it and a nurse beside every bed. it was silent except for one screaming kid. i instantly knew that scream. it was our little boy's scream. we rushed over to his bed where the nurse was trying to bottle feed him sugar water but he wasn't having any of it. i asked if i could pick him up and felt huge relief when she said yes. i scooped him into my arms and tried desperately to calm him. he was a different child. he was super floppy, couldn't hold his head up and was a blubbering mess. she pushed his bed down to the recovery room and we followed her, me carrying him. she left and original nurse returned. our nurse said we could feed him a bottle but to really dilute the formula and only give him a couple ozs. he gobbled down 3 ozs and continued to scream when we took the bottle away. we fed him some sugar water and he really wasn't enjoying it but did his best to chug some back. the crying continued. finally after 20 mins of crying he settled. i actually put him into the rocking position i used to carry him in as an infant. he hasn't let us carry him like that for months. he calmed right down as i rocked him.
once his body relaxed i sat and enjoyed cradling our little one for a bit. after 5 mins he dozed off. the nurse came in a while later and was happy that he hadn't thrown up. she said "if he was going to he would have by now". YAY!! she took his IV out and he didn't even wake up. we were then told that we could dress him and take him home.

the car ride home was one of the best car rides we have had in a long time. he was out of it enough that he was calm but not so out of it that he was cranky.

he has been cranky on and off the rest of the day but all things considered he has been amazing!

when we undressed him for his bath this evening we found this rash (which wasn't there when we dressed him before leaving the hospital). we didn't even know that he had anything on his chest during the MRI. hopefully it will be gone by tomorrow. poor little guy went through a lot today. may he rest well tonight and feel 100% normal tomorrow!

oh and why did the MRI take so long? we have NO idea! we were not given any info about how any of that went. we will however get the results on jan. 25th when we see the neurologist again.