It's never gonna end....

I got a call from one of Dr. Frieden's fellows today. The Vascular Anomalies Clinic met today at UCSF and Dr. Hess (their radiologist) looked over Maxwell's MRI/MRA. He discovered Maxwell does have the brain abnormalities associated with PHACE Syndrome. He said his cerebellum is abnormal and the structure of his Pons didn't form properly. They said he is going to experience developemental delays. This also explaines his facial palsy. He is also experiancing diminished muscle tone, that is why he collapses at times because he doesn't have the muscle strength to hold himslf up. For some reason Kiaser didn't put Maxwell's MRI on the disk that they have as UCSF so we will get more info when they receive that. They would like him to also get a true hearing test done when he gets his throat scoped as well as a GI swallow test. So I guess now Maxwell has P-H-A-E of PHACE Syndrome. He has many more appointments coming up and I will keep you all posted as we get new and more info. For now here is some info on what the abnormalities in his brain may mean.

Cerebellum - The cerebellum integrates information from the vestibular system that indicates position and movement and uses this information to coordinate limb movements.

Pons - The pons contains nuclei that relay movement and position information from the cerebellum to the cortex. It also contains nuclei that are involved in breathing, taste and sleep

The cerebellum is folded into many lobes and lies above and behind the pons. It receives sensory input from the spinal cord, motor input from the cortex and basal ganglia and position information from the vestibular system. The cerebellum then integrates this information and influences outgoing motor pathways from the brain to coordinate movements. To demonstrate this, reach out and touch a point in front of you, such as the computer monitor -- your hand makes one smooth motion. If your cerebellum were damaged, that same motion would be very jerky as your cortex initiated a series of small muscle contractions to home in on the target point. The cerebellum may also be involved in language (fine muscle contractions of the lips and larynx), as well as other cognitive functions.


The cerebellum, located beneath the occipital lobe and posterior to the medulla and pons, is an important regulator of motor function. It connects to the brainstem by three paired bundles of nerve fibers called the superior, middle, and inferior cerebellar peduncles. Integrity of the cerebellum is necessary to perform smooth, accurate, coordinated movements; to maintain posture; and to learn and regulate complicated motor patterns. Damage to the cerebellum does not produce muscle paralysis or paresis (weakness), but rather a loss of muscle coordination called ataxia

The cerebellum is a relatively large portion of the brain located near the brain stem that is primarily responsible for motor movements, but may also play a role in speech, learning, emotions, and attention

I haven't wanted to post....

anything since there is nothing really new to post. Well I guess there is it's just not what I had hoped for. So friday we saw Dr. Frieden and she was very kind but we were expecting to see all of the specialty Dr's that day to get more info and that didn't happen. She bacisally told us that we are heading in the right direction and instructed us on anything else we weren't doing already. She would like us to get the following done on Maxwell.

-Scope of his throat by ENT to see if his airway is narrowing from the hemangioma in his throat. (this is in the process of being set up and the dr who is doing it said he can fix whatever if any problem there is while he is in there. Max will have to stay the night in the hospital after the procedure if that is the case)

-Talk to his nuero surgeon about his risk for stroke.

-have his opthomologist specificaly check his retnas

-have a hearing test that checks his brain waves instead of the one where he turns his head toward the speaker and toy.

Micah asked her can we hope for a normal life for him and she said sure you can but don't go bury your head in the sand and pretend there is nothing wrong She said some of her patients are in school now and doing good, they may be a little more clumsy than most (I guess from the lack of oxygen to the brain) but some of them are develpentaly disabled. We kind of have to wait and see what happens. In the meantime she doesn't want to see him in the Vascular Anomalies clinic but on the 12 of March she is going to speak to thier radiologist at UCSF to see what he thinks about Maxwells MRI/MRA since he has seen 70 of these PHACE kids. I guess looking at all we are doing now it does seem like we are moving in a forward motion with everything. I was just seriously finding it hard to not shut down after his appointment. That's a lie, I did shut down for about 20 minutes. It was then God spoke to me and said, Stephanie, he is not yours. He is MINE. You are puting your faith in all that you can do and all the Dr's can do. I want you to trust Me!!! He continues to shop me where my faith needs to be placed. And to be thankful for every part of this. It is through this where His glory is going to truly be revealed.

So my prayer now is that I would just be thankful for everything. Especially thankful for every malformed vessel in Maxwell's brain that was so delicatly fashioned by the Master for his eternal purpose because He IS good! Last night at church we sang this song. I have replaced a few words but this is what the Lord wants me to remember:

For I know that You are good

God I know that all you do is good

So I put his life in Your Hands

he's Yours alone

he's Yours alone

Surrender, Lord I raise my hands to You alone

to You alone

So if you want to pray for our family please pray for continued thankfulness and peace. It seems easy at the moment when everything is a little calm but if something does happen I would like to keep the same attitude of thankfulness. So I guess that's all for now. I will post again when there is more info.

I really stink at updating

So I guess last time I updated Max was going to see the cardiologist. We got some great news in that department!!! His heart was totally normal!!!  So I am guessing Maxwell's offical diagnoses will be PHACE Syndrome but he only has the H-A-E parts. Also he is being reffered to the Dr. who coined the term PHACE syndome. She is the one who knows just about all there is to know about and how to treat this mess. We are hoping to see her by next week since Maxwell seems to be having some issues right now. So anyways I will try to do better about the posts. We are hoping and praying for some concret info and treatment for him very soon!

hearing appointment

So today we only had a hearing appointment for Maxwell and she said as far as they can tell he can hear out of both ears:) The only thing is we still don't know how one of the malformations in his ear is effecting him. I am gonna call the dr today to see what else they can do to find out why he is so fussy, vomiting, sleepy and crying all day long!!! Tomorrow is his cardiologist appointment at 1:30p.m. so PLEASE PLEASE pray!!! Thanks

Here is the picture slice of his brain. I don't know if you can see it but the dr is pointing to the jumble of arteries that is probably making him deaf on his right side. Next time I will get one if the arteries in his brain. It looks very interesting.

Maxwell update

So we had a narley week after my last post. EVERYONE in the house got a super bad stomach flu It was so bad!! Maxwell made a few trips to the hospital cause he was doing so terrible. Thankfully everyone is on the other side of it now!!!!! Man I felt like I was in the depths of hell these past few days! So anyways here is the update on Maxwell's appointments from yesterday.

Appointment #1 - Maxwell saw 2 dermatologist yesterday and they were very pleased with the way his hemangiomas looked. So pleased that she is probably not even gonna need to treat them at all!!! Praise the Lord for that one:) She also is in touch with a Dr at UCSF who actually named PHACE Syndrome. She is going to send all of Maxwell's info to her and see if she would like to join in on his case and maybe do a study on him. This was so great to here since one of the other PHACE mom's on my support group reffered her to us and I already tried to contact her. Praise the Lord, His hands are all in this. Maxwell's dermatologist is in contact with this Dr. everyday since they are good friends! So that was some good news!

Apppoinmtment #2- Maxwell saw the Nuero surgeon. He said Maxwell's brain looks good. He does have some fluid on the back of his brain but almost everyone does and that is fine. What is worring him is the tangeled mess of arteries that are everywhere. He doesn't know what to make of them and he said they are dangerous because if one of them ruptures he can have a stroke or die. So he is going to refer Maxwell to have an angiogram to get a better look at how his artieries and vessels are working. Some how (by the hand of God) he is getting blood to the right side of his brain even though his right coratid artery is a mess. He also said that there is a mess of viens that are most likly interfering with his hearing in his right ear. So he is going to have a hearing test done to see if he can even hear out of that ear.  So we are kind of in a holding pattern for that part, again.

Appointment #3- Maxwell saw the geneticist 3 to be exact. They said yes, Maxwell does have PHACE and that they can not really give us a good outlook on what his life is going to be like. This disease is so new to them that they have no road map to follow. So we kind of just need to have him followed very closely(which we are doing) to try and catch anything that is going on. They tried very hard to connect all of the different problems we have had with ourselves and our children and they really couldn't make any connections. We just happen to be really lucky when it comes to bad luck:( I wish it was the other way around so that we could play the lotto!! Wouldn't that be nice. But I guess we could be rich but we would still have all these medical problems so what will that make a difference?? Well I guess it would help we wouldn't have to worry about how we were going to pay for all of these appointments and procedures:) Oh well, we do what we can.

So this thursday Maxwell has his echo which every doctor stressed that we have done soon. I will post with an update on how that goes afterwards. Please keep praying:)
P.S. Will someone please tell me how to edit these post for spelling. My spelling stinks and I can't find the spell check on here!!

More info...

Maxwell had his EEG today. His neurologist said it looked normal so we just have to keep watching him and that he may be having them but we didn't catch one today so we will see.

Monday we go back to Oakland to meet with the dermatologist, the neuro sergon, genetisis and the nuerologist. they will be able to give us a lot more info on each one of his problems. I am still trying to get him in sooner to see the cardiologist for his echo but as of right now he is set to see her a week from friday.

So please keep praying if you will. This is so stressful on our entire family. Thanks

Update on Maxwell

Maxwell had his eye appointment today and got diagnosed with Right sided Horners Syndrome. I guess is caused by damage to the sympathetic nervous system. It isn't gonna make a difference in his vision at the moment and he will probably need glasses but that isn't that big of a deal. So that was some good news I guess. Here is a little bad news. Maxwells neurologist thinks he may be having multiple seiziers during the day so they got him in at 8:30 a.m. in Oakland for an EEG to see what is going on. Since we are going to be there tomorrow we are hoping to meet with dermatology, the vascular radiologist, the neuro surgeon and the genetisis. Please pray for us tomorrow as we battle rush hour traffic in the bay area, for our sweet cousin who is coming to watch our other kids and for all the doctors that they would know what to do for him and that they would squeeze us in since we are going to be there I will post another update as soon as I have one.

P.S. I stink at spelling and this new blog thing doesn't edit it??? so excuse the mistakes:)

Long time no write....

So I finally was able to sign into my blog!!! Some of my family members were wondering if I was ever going to post again and I guess it is time to do that now.

ALOT has happened since my last post. Let's see I had cancer, chemo for a while and now it has been 7 months since my last treatment and so far so good. I should officially be cancer free in June! We are so thankful that the Lord brought us through that very hard time in our live. So so many people had a hand in holding our precious family together and I can't even begin to list everyone but am looking forward to Thanking everyone of you when we are together in our eternal home!!!

Now this year we were hoping that we could start off this year on a better note with no major illnesses and just a break from the stresses that once were. Well It looks like God had another plan. Last week we found out Maxwell is gonna be facing some tough hurdles in his little life. What seemed as just a problem with his Hemangioma on the side of his face turned into a major medical problem that we are going to have to face for the rest of our lives. Maxwell was diagnosed with PHACE Syndrome. Here is a little bit of what it's all about:

PHACE Syndrome which is a combination of different abnormalities. Each letter stands for a different abnormality:

Posterior fossa- These are brain malformations that are usually present at birth. These brain malformations do not form after the infant is born.

Hemangioma- The hemangioma usually covers a large area on the skin of the head or neck (greater than 5 cm). The term "segmental" is sometimes used to describe these hemangiomas.

Arterial lesions- The abnormalities of the blood vessels in the neck or head.

Cardiac abnormalities/aortic coarctation- These are abnormalities of the heart or the blood vessels that are attached to the heart.

Eye abnormalities.

So far we know for sure he has the "H" and "A" part of it. Only the Lord knows haw this is all gonna turn out and why He is allowing our family to go through yet another crazy rare medical situation. As if losing a child six years ago to a rare heart condition, getting pregnant with triplets losing two of them and then problems with my pregnancy Maxwell being born with facial palsy, me almost dying a few weeks later only to be diagnosed with a rare cancer????????

Looking back it is just so amazing to me that we have gone through so much! But you know what we are still here stronger than ever before and it's only because God's grace has carried us through! So here we go again Lord, clinging to the One who sacrificed so much for us. James 1:2-4 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything.

So as we go through this not only is God working we know He will work through all of you too. So please keep praying for Maxwell. Here are some of the things he needs prayer for:

2/2/10 eye appointment to check if his vascular abnormalities are effecting his vision.
2/12/10 Echo cardiogram to see if his heart has been effected by the vascular abnormalities

Ongoing would be for physical comfort for Maxwell he has been very fussy lately and we are unsure if the vascular abnormalities are causing him pain right now.

Right now the Nero surgeons, vascular radiologist and genetics are pouring over his file to see how we need to approach everything. Please pray for wisdom and understanding as they do this.

And last but not least prayer for our other children that they would give us grace while we are dealing with us and that we would be aware when they are struggling so we can make sure we are not being consumed with our own things and still loving and caring for them.



A few things to be thankful for already are Maxwell's liver and kidney's are NORMAL!!! And when the neurologist saw his brain scan she said is looked good:)So I guess that is all for now. Praise the Lord everyone else in the family is healthy right now. I will update again when we know more.

Another update

The nodules in my lungs are where the cancer has metastasized to So I am having a full body cat scan tomorrow to see if it went anywhere else and will be seeing the oncologist on Friday or Monday. I will be needing chemotherapy and at my appointment I will find out how much and the stage of my cancer and everything else. I think my first treatment will be next week. Please keep praying for me. I know the Lord will take care of everything I am just really scared of all the side effects of the chemo. So please PRAY!!!!

Life update

So I have waited quite a bit to post an update on our blog. It was a little bit on purpose but not so much. I believe everyone pretty much has found out what has happened these last 6 weeks if not here is the rundown. WARNING!!! This is a very long story and there is a lot of talk of blood and medical procedures so read at your own risk!

March 9 Th I went to the Dr for a check up on my blood pressures for my pregnancy. My pressures were no good so they sent me directly to labor and delivery to take Maxwell out.
Maxwell was born around 1 pm 5 lbs. 14 oz. 19 3/4 inches long (a very tiny boy, just skin and bones!)and we went to recovery. In recovery they noticed his face seemed a little different and they called in the pediatrician. Come to find out Maxwell has Facial Palsy on the right side of his face. Basically the right side of his face is paralyzed. It isn't really noticeable unless he is upset and his right eye doesn't blink and takes awhile to close when he goes to sleep. So you can often find him sleeping with one eye open. Good news is it doesn't effect him to badly right now. We just need to be careful to keep his eye moist and protected from any scratches so he doesn't go blind in that eye. So back on to recovery..
So they sent me to my room and 2 days after my surgery I was in alot of pain. I told the nurse while I was bawling in pain from walking and she checked my incision and called the Dr. Apparently I had HELLP syndrome and my body was destroying my white blood cells and I wasn't clotting so I was bleeding into my incision! The Dr immediately ordered two pints of blood for me stat and there was my first blood transfusion.
2 days later I was better and getting ready to go home when I spiked a fever! Then came a battery of test to find an infection. I had blood drawn, urine tested and chest x-ray done. I guess they found a bladder infection and also found nodules in my lungs. The nodules could have been cancer but I have since had a cat scan and they say they are benign and I just have to have cat scans every six months to monitor them.
So now I am home recovering and almost two weeks after being home I am having heavy bleeding. I went to the Dr and they put me on some medicine to get it to stop, sent me to get an ultrasound to make sure I didn't have any retained pregnancy products and told me to go to the er if it didn't improve. I went to the er that night and the put me on more meds to get it to stop.
A few days later I woke up bleeding very badly and in extreme pain. I had to call the ambulance to take me to the hospital. After 15 hrs of bleeding out in the er, seriously I was in and out of consciousness and my legs were turning blue, a Dr who knew what he was doing and came in and said "she is hemorrhaging and needs blood now!" I was then getting my second blood transfusion and then wheeled into the or for a DNC that was to take 20 min. 2 HOURS later the Dr came out and said he did everything he could to stop the bleeding and he thinks he did it but I was not out of the woods yet. I woke up in my room and didn't remember much.
2 days later the bleeding started back up again and I was so done so I said take out my uterus. They had my uterus out within a couple of hours and with one more blood transfusion I was on the road to recovery. The Dr's said my uterus was pretty much falling to pieces when they took it out. A few days later I got to come home.
One week after my total hysterectomy I got a call from my Dr. Apparently I had cancer. Choriocarcinoma to be exact. Luckily he said they did the right thing in taking out my uterus. So now I am getting my blood drawn every week for the next ten weeks to see if the cancer hormones come down. If they get down to 0 I will be cancer free! If they stop coming down or start going up I will be sent to the oncologist for chemo and whatever else they need to do.
I am praying that I will be cancer free but know that the Lord has it all under control and I WILL TRUST IN HIM!!! I am not saying I haven't lost it once or twice OR maybe a few more times then that but ultimately the Lord is good and He will be glorified no matter what!!! AMEN?

So that is it for now I will keep posting updates on my lab numbers. For now here is a few pictures of Maxwell :)

Baby update...

So we had our pre-op appointment today and the Dr said baby is pretty ready to come out...But they are still waiting til next week on Thurs unless I go into labor. I have lost a few more pounds which is exciting giving me now only 18 lbs to lose after I have him to get to my pre pregnancy weight!!! Even though I would like to lose more than that I am sure it is going to take some time. But I guess that's it for now. So any day now or for sure on Thurs the 12Th!!! Almost there:) And here are a few more pregnant pictures I am now 38 weeks or 9 1/2 months!!

No baby yet...

but baby Maxwell, yes Maxwell has pretty much stuck as his name. So yeah, no new news on him lately but I wanted to post a picture of the awesome crib and bedding Micah picked out for him. I was so excited to see Micah get so involved in getting this ready for baby Max! He even put the crib together all by him self! Something I don't even think I have ever let him do. So It was super cool seeing as this is the last one for us. So that's it for now. Hopefully next time I update there will be a baby in that crib:)

NINE whole months!

So I am now Nine whole months pregnant! 36 weeks! I had a check up today and I am 1-2cm 60% effaced. Baby is big according to the doctor. I am measuring at 37 weeks right now. They did a NST today since he has stopped moving as much as usual and the test was fine, he is just running out of room in there. I have not gained any more weight since what I lost since the diabetes which is nice because I don't want to have a ton extra to lose after he's here. So as of today I have gained 21 lbs. I have a pre-op appt on March 5Th and then he is set to come out on March 12Th at 12 noon if he doesn't decide to come before than. I really doubt I will make it to that day I am guessing sometime between Feb 27Th and March 2ND so we'll see. I have never made it past 37 weeks and some change but I am sure there is always a first. So that's it for now. Here is another picture of my huge belly. I happened to be wearing the same thing from the last picture. So that's it for now. I hope the next update is when he is here but if not it will be after my appointment on the 5Th:)

And I am HUGE!!!!

Okay so I am 33 weeks 4 days and I am HUGE!!! I think these are the first belly shots I have taken of this pregnancy and comparing them to my previous babies WOW I am HUGE!! So we are due to have him on March 13Th If he doesn't decide to come before then, which is quite possible since the last three babies I had have been born between 37 weeks and 37 weeks 4 days and I have this gestational diabetes thing. So that means he could be here in as soon as 24 days! Wow, I am by no means ready for him which is sad I know but it has been so crazy around here!!! But I am trying not to stress out about it because the Lord has got it all under control :) Also my gestational diabetes is going as well as it could be. I have been able to control it by diet which means NO SUGAR and following a very strict diet given to me by the dietitian. I have since lost 7 lbs because of it too and that was as of last week! I am hoping to stick to the diet even after I have him so that hopefully I can lose the baby weight too. Well I am praying it helps, we'll see. So I guess that's all the goings on in my pregnancy right now. My next appt isn't until the 20Th and I will be 36 weeks then. So I guess that is when the next baby update will be :)

Bowling

Marcus bowling

Myles Bowling

Here is Myles' first time throwing the ball down the lane!! I hate that we live so far away from our family and hate missing my nephew's and niece grow up but getting to be a part of these first make up for it :)



Here were the final standings. Jess' final score was a 120!! And Marcus and Myles did better than I ever could :)

Family comes to town!!!!!

So we were extremely blessed to have Nick, Jess, Myles and Maggie come visit and stay with us!! We had so much fun hanging out. Micah and Nick went to work in the truck one night while Jess and I hung out with the kids and played a game called "beat the Parents" which Jess and I lost and watched a Movie after. We went to the mall one day, went to church together on Sunday then came back home and watched the Super Bowl with the guys. Micah and Nick have been really enjoying their nights together, last night they went to bed at 4:15 ion the morning and as I type this right now Micah, Nick and bobby are setting up their football teams on the PlayStation. I am sure they are going to have another long night. We also went bowling this morning with the boys while my girls were at school. Myles had never been bowling and so that was super fun to watch. So yeah, Marcus and Myles had a lot of fun and Marcus really really didn't want to let Myles leave :( I can't wait to see everyone else soon...I hope! So here are some pictures of the kids...

Here is Myles watching his ball

Marcus watching his ball

The boys

Here is my beautiful niece Maggie!!! She is too sweet and I love her so much!! I am very thankful that I have at least one niece :)

Here she is again :)

And Again:)

Here are the boys playing at the mall on this cool thing that is hard tp explain

The boys playing with bracelets at Claire's in the mall

And another of my niece, and Adrianne too of course

Here's an update..

Here are some pictures of what we have done when the kids were not sick in January, which was only like a week. Matthew got a much needed haircut and when we were sure the kids were well we took a venture out to the park. My poor boys were cooped up for so long in january they were so grateful to be playing outside! It was very nice to see them running around and letting loose :)

Goin down the slide with daddy

Matthew was not at all scared to go down the slide by himself at all

Lunch before we played

Matthew Haircut after

Matthew before his haircut

Jenkins family soon to be SEVEN update!!!

So we had quite a December and I finally have a chance to post about Christmas and such. So after we got back from our family vacation/brothers wedding in Indiana the boys got the stomach flu and were like that for a good week. Then we had Christmas which turned out better than I thought it would thanks to my awesome husband who loves us sooo much! Then a few days later we went to my moms for a visit and then to the coast and saw family, which was great and much needed!! We spent a quiet New Year with Rick and Tina and came home a few days later. We made it to church on Sunday and Monday the boys woke up with some nasty colds...of course I am now getting it since they are hacking all over me, but oh well it's just a cold and this too shall pass! And last but not least I went to the Dr today to check on the baby's heart one last time and the Dr's said he looks great!!! He is measuring a week bigger and is just an ounce shy of 3 lbs. right now and I am only 29 weeks! I really can't wait till he is here!! We are going to be spending the next 2 months getting ready for him...who by the way still doesn't have a name!!! Soon I hope we will figure that out:) So any ways here is a picture of our baby boy #3!!! I hope everyone had a great Christmas and New Years and I pray this year will be a great one for all of us!!! Love you, Jenkins Family Six almost SEVEN!!!!