So much choas....I don't know how to start...sorry if this is hard to follow...
For those of you who do not know, our Little Man was born with a capillary malformation (aka Port Wine Stain-PWS) on the right side of his ear, face, neck, and head.
Some may just think it is simply a birthmark, as we first did. Apparently it's not. This is not a very common thing as it only occurs in .3% of births worldwide. Having this puts him at risk for having
Sturge Weber Syndrome. Sturge-Weber Syndrome is a congenital, non-familial disorder of unknown incidence and cause. It is characterized by a congenital facial birthmark and neurological abnormalities. Children with this Syndrome suffer from glaucoma, seizures, behavioral issues, learning disabilities, and muscle weakness on opposite side of PWS. There is no treatment or cure for Sturge Weber Syndrome and no known cause. During development in the first few days of conception something "mis-fires" and apparently this happens. Our Little Man
has not been confirmed on having this syndrome yet. To confirm this an MRI/MRA is performed. During this test, one must be sedated which poses risks to the baby. Therefore, his MRI will be done in Marshfield. There is currently a debate going on with his doctors as to when the test will be done. We have been on a whirl wind roller coaster of an emotional ride regarding our dearest Little Man in the last few weeks regarding this test and treatment of the PWS.
Yesterday we went to Milwaukee Children's Hospital to get a second opinion and answers questions on why and when we would get treatment for the PWS. God is amazing how he works. Just a little over 2 weeks ago, we had no clue what all of this was even about. I was at Moms and More at church. One of the ladies there saw our Little Man's PWS and asked, "is that a port wine stain?" I was in complete shock, not many people know what he has. I said yes and she continued to tell me that a friend of hers has a baby a little older than mine with the same thing! Then a few days later, the mother of the other PWS baby calls me!! This lady who was a complete stranger but dear sister in the Lord opened our eyes to the possibility of treating our son and finding out more information by seeing a wonderful specialist down at the Children's Hospital in Milwaukee. I'm incredibly thankful for this woman contacting me and I praise the Lord he has opened these doors for us.
We had many questions, many questions were answered, and some questions remain...
He had an eye test done at one week old and the findings were normal-no signs of glaucoma. He has another eye test at the end of February to check again because glaucoma can start at anytime. He has a better chance of not having it since he passed his first test. Please pray he passes his second test.
He also had a hearing test done to make sure it isn't affecting that as well. He passed but hearing loss could develop overtime so he will possibly need that re-checked in the future. But we praise the Lord that our Little Man can hear us today!
The PWS on the head, neck, and face is treatable with Laser Surgery. The ear doesn't respond well. The reason we are considering treating it is because when he is older it will grow, swell, and have blood pockets that form on the PWS. The blood pockets do break open and get infected. When this occurs many patients are put on antibiotics to get rid of the infections. This can happen over and over again until laser treatment is done. So to save him the struggles, pain, and suffering; it will be much easier treating him as an infant than making him get it done when he is older. The treatments are done every 8 weeks and he will need anywhere from 5-12 treatments. (all done at the Milwaukee Children's Hospital) They can start treatment as soon as insurance pre-authorizes the treatment. We are currently waiting for an approval letter in the mail. It should be here in a week or two. Please pray insurance approves us.
Ok, now on to the scary stuff.... Our Little Man has been having a few "episodes" or "spells" it what the doctors call them. He has had 6 of them in the last 2 weeks. When he is sleeping, he starts breathing weird...fast, shallow, and high-pitched; his head, eyes, and eyebrows start to tremor/shake (if eyes open they roll in the back of his head) then the weird breathing happens again. These could be relatively normal baby stuff but it concerns the doctors and terrifies me. I called his pediatrician today and she had me bring him into the clinic almost immediately, then sent me Marshfield for an EEG. Thankfully the EEG came back normal. However, he did not have one of his "episodes" during the test. So this is where the debate about when the MRI should be done comes in. One doctor says it needs to be done NOW. The neurologist and Milwaukee specialist usually waits until 6 months old to do the test. However, because of these episodes, we are not sure when we should have it done. The risk of testing to early means that he could still have Sturge Weber Syndrome but it won't show on the MRI until he is older. Essentially they are looking for PWS on the brain, but in most cases it takes time for it to show. So if we test him now, and it comes back that he doesn't have Sturge Weber than they will test again at 6 months. If it confirms Sturge Weber, then we have our answer but doesn't change much of anything. This is because there is no cure for Sturge Weber. They can just treat the consequences of the syndrome. So do we sedate our little 3 month; which involves not eating for at least 7 hours, and IV, and him being put to sleep or do we wait until 6 months? Please pray we can make a informed decision alongside his doctors and do the very best we can for our little man.
I'm currently debating on getting a monitor for Little Man's crib to help ease the scariness of the "possible seizure" situation. So if anyone has experience and would reccomend it, please let me know. I was considering getting the AngelCare Video, sound, and Motion monitor.
Sorry it took so long to get the update online, thank you for your patience, prayers, and support.
